Drs Appointment 26th June

I had booked this appointment online a few weeks ago for no particular reason, I just thought I might need it after I had seen Professor Aziz’ team the second time whatever the outcome had been.  Then following the two A&E visits with my shoulder I had something else I needed to speak to the doctor about so ultimately by the time the appointment came around I actually needed the appointment more than I realised.

As usual we booked in really quickly and the electronic system asked us to wait in the main waiting area, we sat and chatted for a couple of minutes and then Dr Mason called us through five minutes early!  I explained straight away about my shoulder as that was giving me the most issues at this point, I explained about the second visit to A&E and their suggestion of a corticosteroid injection to try and help with the injury.  He said although he tended to no longer do them, he felt physio would be more beneficial, but with that still such a long way off, he would do it.  I was sort of relieved but nervous and asked about making another appointment to get it done and he said no, he would do it now!  What now, now!!  Panic set in, well that was one way of making sure of not having time get nervous, he got all his bits together.  He sat me next to Andrew in my chair and injected the steroids into my shoulder.  Did it hurt?  Yes of course but my arm and shoulder hurt too so its all relative to that.  He’s a really good Dr and he didn’t hurt me that much, so for that I am really grateful.

Next up I asked if he had seen the letter regarding the feeding tube, he hadn’t, so I showed him my copy.  He had a look on his system and it was there but no actions had been highlighted, so he made a note to contact the nutrition team on Monday and would then call me next week to discuss the way forward.  He said we would get it sorted as soon as possible.

I asked for a couple of repeat items on my repeat prescriptions and then I let him know that I had met a lady the previous week that is also a patient at the same surgery she also has PoTs, possible EDS and something called Sjorgrens Syndrome which is an auto-immune condition.  Her doctor is the main partner of the surgery and I thought it might be useful if they “shared” and “compared” notes on their patients as he had never had a patient before.  He was really pleased about this information and would go and speak to his colleague about it.  He did say it was possible I could have the Sjorgrens Syndrome but I should speak to my new PoTs team about it, they would be able to advise regards testing.

So all in all todays doctors appointment went well, at least i had my shoulder treated quickly and with little fuss, now I’m just willing it to get better.

Team W21

On Thursday last week W21 Music hosted an event in central London, it was for the EP launch for an up and coming country music artist called Laura Oakes.  Andrew was to help with the event management and to design all the lighting, to make the artistes look good on the night.  The run up to the event had been fraught with some stresses but as the day drew close there was little that could be done or changed so it was just a case of what will be will be.  As for me and with my health issues the day before I was unsure if I would be strong enough to cope with a day in London at an event but I really wanted to be there, to catch up with so many familiar faces and say hello. I hadn’t seen so many of our “Country Family” for quite a while, so I planned to do my best to get there.  I headed to bed fairly early Wednesday night and hoped for a rested night, if my shoulder would allow.

It wasn’t the best nights sleep but when I woke up the sun was shining and that always helps lighten my mood.  I took all my morning tablets and waited for them to start working and then made my decision, yes I would be heading into London with the rest of the Team.  Andrew went off to work, he needed to load up and do a few bits and would then come back to help me get up, washed and dressed.  By 12:30pm we were on the road and heading into the City, it was such a lovely day. The sort of day that makes you feel good to be alive, no matter how much pain I am in. To know we were going to enjoy an extra few hours together, along with our good friends just makes it so much better. As we headed through Knightsbridge the traffic began to build up, but we just people watched as we waited to get through. It was a glorious day in a beautiful city!

Eventually we made it to the venue which was on Piccadilly Circus and we parked just behind, unloaded the equipment and the boys went to set up. After an hour they came and got us and we went inside the venue, it was down several flights of stairs and the boys decided to carry me in my chair! There was a burlesque photo shoot going on down the stairwell, so I had to be careful the boys didn’t get distracted lol. Once we got inside we started to get the merchandise stall organized and it all looked really good, if I do say so myself. The venue was lovely, as you would expect for London I suppose, the soundman was doing his thing, Andrew was programming his lights, all we were just waiting on were the acts to arrive.

Once the acts turned up, and we were all happy that our little areas were completed we headed off to grab some food, everyone hadn’t stopped for ages and would need feeding as they wouldn’t be stopping again until the early hours of the morning. En masse we went to Leicester Square and grabbed something to eat and drink, all chatting easily about what a good night it should be. We took a leisurely stroll back to the club, Leicester Square was packed, it was so hot, there were breakdancers, human statues and buskers on every corner. This is why I love London it is just so vibrant and busy.

We made it back to the club and once again I needed carrying down, the boys do look after me beautifully. Once inside I was made comfortable behind the merchandise stall, it was just gone 7pm and the doors were about to open. Andrew checked I had everything I needed and then explained where he would be, he told me what to do if I needed him.

We had three acts during the course of the evening a band called Fitzwallace, Megan O’Neill and Laura Oakes, who’s EP Launch the event was being held for. During Megan’s act Ben from The Shires took to the stage, which was a real treat, he is always a pleasure to listen to! The whole night flew by far too quickly and I spent most of it not only helping out on the merchandise but I was also working on the Social Media side, tweeting as much as possible.

It was lovely to see familiar faces from all our previous events and I just appreciate every hug and squeeze that is given by my “country family” each and every one of them is so special to me. Sadly the night had to end somewhere and it was of course far too soon but we felt it had been a huge success.

The Team are lovely and supporting UK country music has been important to Andrew and I for a long time and now we can be a real interactive part of it by being part of W21 music, so thank you Pete for allowing us both to join you in your mission to bring Country Music to the masses

Silent Sunday – 28th June

  

A Rough Weekend

I think we were both dreading this weekend but for different reasons, me for the after effects of the botox vs the shoulder and Andrew because of two huge gigs he had going on.  Andrew has been a DJ for all our lives together and I don’t usually struggle with it.  Saturday he headed off to work and I wasn’t feeling too bad I knew it was a late one, I hadn’t eaten as I felt nauseous but that wasn’t a major problem, after all I barely eat anymore.

Andrew did his best to keep in touch throughout the evening, I was watching “Orange is the New Black” as my bestest friend had given me her Netflix log in so I could watch the whole of the brand new series, which I managed to do that very day!  Finally around 9pm I tried to eat a little as I knew I wouldn’t be heading to bed until the early hours either, plus I couldn’t cope with Andrew’s nagging via text anymore.

The issue I have when Andrew works late is I can’t settle in the house alone, we have a house alarm and despite this I still get scared here.  So I managed a little food and settled down to watch more of OITNB, more texts flying between us, we were doing ok, both tired I could tell by the nature of his messages, my shoulder was not good but I was managing to get through the pain, I stayed downstairs for as long as possible and then decided to call it a night.  I locked up, put on the hall light, checked I had locked up again (a bit OCD i know but I have to do it) and then went up, it is hard to get upstairs, especially at the moment, I only have the use of one arm.  I normally use both hand rails, so there I was trying to crawl on one arm with an iPhone, an iPad, my drinks bottle and my used meds box for the day, it took a while but I got there, eventually.

I settled myself down and continued to watch rubbish TV and then once I could take no more of that,  I flipped to my iPad to playing games and social media, seeing who else was awake, by now it was 2am.  Finally the text came in at 3am to say he was finished and would be home in about an hour or so, I heaved a sigh of relief, for him as much as for me, he would be knackered.  As much as he puts on FB that its “great” and he “loves” it, it is exhausting and its now causing him medical issues 😦  Eventually at 5:15am my poor husband climbed into bed, I think he fell asleep in ten seconds, I didn’t but I was comforted to know he was home.  Before he got into bed I managed to get him to give me more painkillers and sleeping tablets in the hope of knocking myself out for a few hours.  I think it must have worked I dozed off for a bit, but once again the throbbing in my shoulder woke me back up.  Andrew was so tired that I got up and let him sleep, he really didn’t need me fidgeting next to him, so most of his Father’s Day was spent asleep.

Now sadly by the time he came downstairs I noticed I wasn’t feeling too good, I had begun to burn up, a real fever, I don’t get them too often.  He had bought down the duvet so we watched the Grand Prix wrapped up and I was still shivery.  I made a point of drinking loads of my electrolyte drink to flush my system of any nasties, I was obviously coming down with something.  That night I struggled not only with my shoulder but with the temperature, I added one paracetamol to try and break the sweats, into every medicine round and it seemed to do the trick but through the night was torture.  Monday morning couldn’t come soon enough I had barely slept and had drunk a litre of fluid during the night, I felt so ill.  The strange thing was I didn’t have a sore throat, runny nose, nothing just this raging temperature.  I spent the day curled in bed, somewhere between asleep and awake I was just drifting in and out.

Andrew had another gig that night and finally I broke, I was just too ill.  I cried as he left me real sobs, I was in pain and had no-one there to help, just for once I wanted him to stay home, to send someone else.  I hated DJing that night just once I hated it.  It was the pain talking and I knew it and so did he, oh yes I told him 🙂  I ran out of my drink at 11ish and needed more, so on strict orders went down on my bottom when I got to the bottom I stood up, only I wasn’t on the bottom step, I was one up, I stepped and I took a flailing step and flung my arms out, and of course my bad arm and shoulder swung out.  It hadn’t moved at all for days, the pain seered through me and I fell down and cried, really sobbed for half an hour, on my hall floor, I couldn’t move and I didn’t know what to do.  My arm was killing me, I was stuck and I was alone.  The pain eventually settled and I calmed down, and I looked at the stairs, there was no way I was walking up them, I felt sick, my pots was now playing up thanks to the pain and with one arm I was going to have to drag myself up them.  So it took me another half an hour to drag myself up the stairs, by the time I got back to bed I was exhausted and an emotional mess.

Andrew and I had stayed in touch throughout all of the night and I told him straight enough was enough, so of course we ended up at A&E the next day.  Its always a difficult one Andrew’s job and my care, a very fine balance but we discussed it afterwards and agreed that with jobs where the hours are stupidly long, then maybe we should make care arrangements, especially when I am already poorly, I think that was the issue this weekend.  I was already sick poor Andrew was on a hiding to nothing.  So this weekend was a particularly rough weekend for both of us, hopefully we won’t go through anything like that again anytime soon.

 

Botox Treatment – Round Two

I couldn’t believe that twelve weeks had come around so quickly, had I noticed a difference in my headache? Yes I think I had. It wasn’t so intense all the time. It was more in the bones, in the jaw and eye socket and I would occasionally get a stabbing eye pain. The intensity had settled down to a 6/7 from an 8 which was a good start in my opinion, so fingers crossed.

 

I’m never sure if the second is worse than the first because you know what’s coming. I already wasn’t sleeping because of the shoulder issues, so was exhausted and looking rough as hell. I tweeted as I do every morning and tagged my lovely doctor, he replied saying he was just walking along the Fulham Palace Road, so we knew he would be there. Along we went and the waiting room was packed, it was a production line of botox therapies for all these poor people like me who suffer from this blight and I looked around the room. It was a broad mix of ages, races and I felt there were more women than men, although I think only Dr W would be able to tell me statically if I was right.

 

Finally it was my turn, “Sarah” he called out, I love that he never calls me Mrs Webb, its always first name terms, he puts me at ease from the minute I meet him. We chatted for a bit about how I was doing, how things had gone on in the last three months and he made a few notes and prepared the needles with the botox. Finally it was time for me to “hop” on the bed, the nerves kicked in and I started shaking, a few deep breaths and I closed my eyes. Now Andrew watches with interest and I can only feel, but it is all very quick, there is no hanging around. He knows exactly where he is going so its just a case of getting on with it and within two minutes my face and front of head was complete. Next step into my chair, which last time was the bit where I thought we had finished. This time I was ready and moved all my hair forward for him. Another minute or two and it was done. Once the needles start going in I would say it is five minutes until the last one goes in, maybe less. Does it “hurt” some of them do, where I have especially tender spots on my head I did wince but others were just like a little bee sting. The doctor looked at me all over “to make sure I didn’t scare the others” and then said he would see me in clinic next to review the outcome of these two, so we could decide whether we were to carry on or not.

 

We left and by the time we got to the lift most of the stinging had subsided, it was more itching and annoying than anything else. As always I was allowed to choose a treat this time I decided I would like suchi instead of cake and we headed into town for food.

 

So that is it until October, I’ve just got to keep recording my headache in my diary for the neurology clinic and then keep my fingers crossed that it keeps dropping the intensity of the pain. If it can get below a 5/10 then I would say it is a success, I will report back in a month or two.

Care and Consideration

Late last week the home phone rang, now I never answer the home phone but unusually I could hear this chirpy voice leaving a message and by the time I could get to the phone she had finished. Next thing my mobile was ringing, it was Laura my lovely nurse from the Royal London. She was just checking in on me because of the way things had been left last week. I said I was ok but once again she knew there might be more to this call than a quick two minute chat. She firstly said that if I didn’t want any of the further tests that they were planning for me, that I could refuse them. I told her I did realize that but if I turned down test then how would answers be provided, if I went through all the tests offered to me then hopefully an answer for my problem would be found somewhere.

 

She totally agreed and understood, I then explained further that it upset me when I read that people moaned how they couldn’t cope with having tests because it made them potsie, sick! too far to travel or just they didn’t like them generally, how sick are these people do they not want the answers to their illnesses that desperately that they are willing to go through anything? My manometry test was horrific and the result was all clear, so technically it was a waste of time but I had to do it, to get that answer. To have that test I couldn’t take any of my medication including all my pain relief for the whole morning before my appointment, I was in agony by the time we finished and very potsie too. There is no point moaning, just time to strap on a pair and get the results you need, because you never know the answers might save your life! Laura started laughing at how passionate I was getting, I was just frustrated that my tests were coming back clear, yet I was now to have a feeding tube and I had been through all that for nothing, should I just have not bothered as well like all the others?  She totally understood, she continued chatting about the feeding tube, reading me the letter that had been sent to my GP and consultant, so I would know what was going on. She told me not to worry it was all in hand. I explained I just wanted it done now, the decision had been made, so lets just get on with it. I was nervous and worried and the longer we left it the more stressed I was getting so I just wanted it over with. Again she understood, she agreed to get a copy of the letter to me, as I explained I had a GP appointment the following week, so I could discuss it with him.

 

I realized then we had been on the phone over half an hour, I apologized for taking up so much of her time, she told me off, that was her job, to support us. Anyway she said listen to me, I sounded much better than I had when our call had started. I thanked her for her call and for all her care and support, she is amazing, she told me to give her a shout if I needed anything and we said goodbye.

 

I felt much lighter when I put the phone down, I had got a few things off my chest, I’d had a chat about my worries about the tube feeding and most of all I had enjoyed a giggle with her, its so good we get on really well, I will miss her when I am sent back to my local hospital.

Playing Catch Up

This damn shoulder was not going to let up, I started with it in a sling as the consultant advised, after a couple of days, having looked on the internet, I took that off. I tried ice packs but with my Reynaud’s problems that didn’t go so well, so I decided I could give heat a go. Nothing wanted to work, so popping pills seemed the only way forward.  I was like a space cadet and I felt so sick with it.

For days upon days I was a dazed mess, my shoulder throbbed whenever I laid down, I could and still can get no sleep. I can’t lift my arm up, I have no strength in it. It was and still is a total nightmare. Hence the blog has had to take a little bit of a back seat, typing one handed is so frustrating, especially for someone who can touch type. At the moment all I can say for iPhones is thank god for predictive text, it guesses most of what I want to say.

Yesterday three weeks after the original injury and after slipping down the stairs on Monday night causing myself to hurt it again, we ended up back in A&E. Once again I knew it wasn’t broken or dislocated but I just needed to know what next. The “what next” was I now have tendonitis of the rotator cuff and require a steroid injection into the tendon to try and settle it back down. The lovely doctor thinks it will take up to six months to heal, six bloody months, oh my god, all I did was play wheelchair sodding basketball!! The injection can be done at my GP surgery but if they are not confident I can be referred back to the hospital for a consultant to do it, whatever way, the sooner the better because I just want this pain to settle and quickly please.

So that is why I will now be playing catch up and telling you about what has been going on over the last few days, although in my little world its not a lot really 🙂

Kings College Appointments

Saturday morning the first correct appointments arrived regarding Dr Gall’s clinic.  I had already had an appointment arranged for 1st July but this was for a Professor Shah, who I knew was nothing to do with Dr Gall, so I checked with the hospital and sure enough the appointment had been booked in error on the choose and book system.  So albeit Burnham Health Centre were being super helpful, they just got it a little wrong this time, mind you when I was chatting to the appointments co-ordinator she was having a rant about Dr Gall’s appointments and the choose and book system.  I have this feeling he has his own personal appointment booking system, after placating her she kindly helped me out and we ended our call rather pleasantly, she gave me some numbers so I could keep in touch with various secretaries to ensure I wasn’t “lost” in the system.

My two appointments are for July which is great for me, that is really quick, I have also heard that Dr Gall has a wait of up to 18 months!  The first appointment is for a 7-day Electrocardiogram Monitor, this is a small device that will be recording my heart rhythm over the whole seven days via electrodes attached to my chest.  So hopefully every time I stand up it will pick up my heart rate jumps, when I have my bradycardia issues it will pick that up too, this will really show all my PoTs problems.

The second appointment is for a Cardiac Trans Thoracic Echo, this is totally non invasive and a scan to check the health of my heart to ensure there is no damage to any of the valves and makes sure all the muscles are contracting correctly.  I have had these types of scans before in the early days, so I am not too worried about this at all.

I have heard that Dr Gall likes to get all his tests completed before he meets with his patients so he can already start with a plan of action, knowing exactly how bad your PoTs is.  I think thats a great idea, saves saying hi and then sending you off for a load of testing.

Only a few weeks and we start with my new PoTs doctor and I feel good about this hospital after all they saved my Mum’s life after her heart attack all those years ago.  I already trust them implicitly.

Our Anniversary

So you’ve read the post about my results from the Royal London.  If not click on the link and you can see what happened.  I woke up the next day after an awful night it was a mixture of agony from my shoulder and worrying about the upcoming procedure but there was a little glimmer of happiness it was our wedding anniversary.  Well in fact it is our blessing anniversary, this is the day we walked down the aisle, so everyone recognizes this date officially.

Despite Andrew having barely been at work he intended on taking me out for afternoon tea, knowing I wouldn’t manage a full meal this would be a pleasant compromise.  He headed off to work and I just crashed, sleeping fitfully for the rest of the morning.  By lunchtime Andrew was stressed and super busy, I told him not to worry, we could do afternoon tea anytime.  You don’t get through 23 years of marriage by stamping your feet and throwing a tantrum.  You have to accept that at times business comes first, this was just one of those times.  I had to think of all the times I had been put first and they far outweighed this one occasion so I said it didn’t matter we could leave it for the day.  I think that’s the key to a long and happy marriage, always being prepared to compromise, giving and taking.

However within an hour Andrew came home to get me ready, partly because my doctor had summoned me to the surgery.  So his plan was to nip out for a quick cream tea at a local garden centre and then take me to the docs.  We had a lovely hour together and once we were finished went straight to the doctors, who was of course running late.  When we saw him he checked my shoulder and decided it was actually sublaxed as well as the rotator cuff injury.  He gave me more morphine patches, so I could up my dosage and then gave me some heavy duty muscle relaxants in the hope it would get the shoulder back in without the need of medical manipulation.  He told me to come back should things not improve, I was hoping I would be better in days not a week or more.

After nipping to the shop to pretty much lock up, we headed off to Reading.  It had been agreed I was getting a new phone as mine was really not right for me anymore.  We popped into a couple of shops and then decided to grab some food as Andrew was hungry.

So despite not feeling 100% the day had been lovely, we received 100’s of messages from friends and family wishing us well and that warms my heart.  It makes me appreciate how much we are loved and cared for, especially when you come across those spiteful people that make you want to run away and take a break from their mean attitudes.

So as I look at these pictures I’m truly thankful to be married to my best friend, the father of my children and the absolute love of my life.  Despite being very poorly in four of those pictures below Andrew never fails to make me smile and as for my lovely daughter who created this collage, thank you sweetie, that’s full of amazing memories.  Let’s raise a glass to the rest of our lives making lots more xx

  

Waving The White Flag

After yet another night of next to sleep and the pain being just off the scale I was just beside myself with what to do next.  Andrew was busy at work and I felt guilty about the impact I was having on him and his business.  He headed off to work, I just laid back down again and dozed in and out of a pain filled sleep.  

Andrew came back a few hours later to check on me but I wasn’t coherent, the pain, brain fog, lack of sleep, strong meds were all having an effect now.  He asked what I wanted to do and to his shock I said could we go A&E at Wexham, this needed checking properly.  It was right at that point he knew how much pain I was in, because I don’t “do” Wexham, But after my third night of no sleep I just couldn’t take it anymore 😢. It wasn’t healing, obviously I hadn’t just pulled a muscle so he helped me up and dressed, and loaded me into the car.

We checked in at the reception desk and were triaged quickly, the usual, can you spell Ehlers-Danlos issue occurred but I didn’t care by now, just fix my arm, it hurt.  After a brief wait we were taken into the “green” area and this fabulous doctor saw me.  He examined my shoulders and stated that my left Humeral head was sitting too far forward, possibly due to a previous injury.  As he felt up and down my wasted arms, he could see an amount of swelling and feel the damage.  Once he was done he announced I had a Rotator Cuff injury.  I was to keep it in a sling for the time being, he wanted to double my morphine patches and keep me on diazepam for a week.  Any further issues and I was to go back 

I was astounded, finally a good and happy experience.  So at the moment I’m a bit stuck with my one arm, I can’t self propel in my wheelchair therefore to go out shopping poor Andrew has to push me everywhere.

We have had to wave the white flag with Wexham for now because this is also where my NJ tube will be fitted so despite not being all that happy about it, we will be keeping a very watchful eye on my care.  One small hiccup and I won’t be hanging around.