Covid Strikes Again

Here we go again

Once more my colonoscopy has been delayed,  I was expecting a call for my pre op this morning and sure enough the said call arrived,  The conversation did not go the way I expected it though, in fact far from it.  With a cheery voice the lady on the other end on the phone said “ I was going to ring you about your pre op but yippee you don’t need one”. When I asked why I was told my colonoscopy had been cancelled now for the fourth time!  Another year to wait.  Now I know they are not the most pleasant of procedures but I am used to them, take no sedation and am quite an easy patient. Well another year of worry ahead for me.  Let’s just hope that they do not cancel this one in a years time,  In the meantime I pray that I do not end up with cancer as a casualty of COVID and all restrictions on procedures.  There was a reason I was told I must have one yearly so why it has changed is beyond me.  Next year let’s hope there are no repercussions from this.  

Soft grandad 

Izzy had a scooter here from when she was about four years old,  She is now ten and she has had her big scooter for years now too,  So many times we have looked at her baby scooter and so many times wanted to take it to a charity shop,  Each time we suggest it we are told emphatically by Izzy “ NO, I love my scooter, “ so there it sits in the garage, taking up precious space close to my mobility scooter,  On a tip run today Colin said he had put the scooter in the car and would place it where others can forage at the tip and take if they so wish.  Job done I assumed until he came home a few minutes ago.  When I asked if the scooter was gone I was shocked to be told no,  Puzzled I asked why and was told that he picked it up out of the boot but just could not bear to see it go himself!  He has decided to make some sort of feature of it in our garden, quite what I have no idea but what a soft grandad he is,  He said he could not stand to see her face when she realised it had gone plus the many memories of her scooting on it.  Let’s hope this is not a pattern and we end up with numerous bikes, scooters etc.  It would be different if it was a dolls house.  We could add to it and make it a miniature village with all her LOL dolls living in it!  

Grassington

Yes our holiday break as a family came off and it was a huge success for most, sadly not for me as I was clearly not well in myself and just wanted to be home.  So with a heavy heart on day three of the break, first thing in the morning I headed home leaving the family to continue on enjoying their time.  Colin took them all to Linton Falls, and to climb and crawl through a cave.  Social distancing went well even in the caves as they were well set up for it.  No way could I have coped with either days activities and though our motor home is so cosy to me it made sense to get home whilst my blood pressure was not too bad rather than wait and it may then be way too low to risk driving,  I was only home alone three days when it was the end of their break away.  All had a great time and can’t wait to do it again,  Of course now COVID lockdown is here again so I doubt anything will happen until next year for away days.  

I could scream

Our dishwasher broke, not quite two years old.  Repair man came out and said we needed a new salt container and another repair man would fit it.  The other repair guy however said we needed a new machine as there were three pin prick holes where salt had corroded and water managed to find its way into the motor,  We were shocked but we were covered as the warranty said it was covered from two years of the machine being fitted into a new house, we had bought this specifically for this house and our builder confirmed the date we moved in, we proved this also with rates bills.  So we were shocked to receive a letter from AEG telling us they were sorry our machine had broken down after two years, actually just less and they would offer us a new machine at a discounted price.  When we asked why they were not abiding by their terms and conditions all went quiet,  A further few e mails and calls and we were told that as we had bought the machine ourselves and handed it to the kitchen fitter rather than the fitter buying it we were only covered for twelve months!  Disgusted we decided they could keep their discounted new machine, I didn’t rate it anyway and we decided to search for another one,  This is actually easier said than done as the one we really liked and we know from talking to our family next door that it is rated very highly by them as they have it , plus it has A+++ rating is out of stock anywhere in the vicinity to us and we cannot have it.  This will be due to COVID and the factories having been closed for so long,  Ever resourceful Colin has a plan.  Rather than buy one we don’t want now we will push ours on until the one we really want comes back into stock.  An order has been placed for some kind of specialist putty used in circumstances such as these and he will repair the two pin prick holes in the hope it sees us through until our new one can be sourced.  This specialist putty has been recommended by others suffering the same issue with the salt corroding the metal.  For sure when we buy our new one I shall follow my son in laws advice and buy my salt from Lidl as is comes in balls rather than granules so no chance of leaving a grain or two behind after filling the salt pot to corrode the metal. 

Yikes - somebody bumped our new car!  

Yesterday driving to collect something Colin pulled up at the traffic lights only for the car behind to keep going, right into the back of our lovely new car.  For a second I was not sure it was a bump, our car stops automatically if we get too close to anyone or anything and if somebody walks in front or behind it too closely- a great safety measure.  I thought this was what had happened but no, it seemed the lady behind us sped up thinking we were going to go through the lights.  She was so devastated and shook up we asked her to calm down, not to worry as it is only a piece of metal and it could be sorted.  It turns out I used to be in productions with the said lady at the Thespians Theatre.   Bless her she was hurrying to work.  It is just another thing to deal with and I pray we can sort it without using insurance as she really does not wish to go down that route. Could do without this right now but it will get sorted. So our car now needs to be looked at by two or three people for quotes.  What a time for this to happen. Still I have no doubt it can all be settled amicably ASAP. 

Pah

I just seem to lurch from one issue to another.  I will hopefully get my weight sorted out shortly with the drinks they can provide so I stop losing weight but in order to supply these I needed a blood test.  Due to my blood pressure dropping way too low we are also hoping to lower my ph medicines, For either of these things or happen  I first needed a blood tests.  One for a renal function test which should have been done three weeks ago.  The blood lady came to do it  with a blood for for a liver function test,  I told her it was a renal function one needed and her retort was “they are the same thing”. Now I was pretty sure liver and renal are not the same but decided she must know more than me.  Said test done and sent off I waited until I got the results, which were normal and informed my PH A Team.  Of course it was NOT what they needed so I have had to have my renal test done.  Now awaiting results so we can sort out my meds.  

A talk with Alex, part of my A Team

Due to issues as already mentioned I had a long talk with Alex today,  He told me to come off the spiroconlactose that just does not help me at all.  My muscles scream and my hands are clubbing.  It is awful for me.  So tomorrow I will not take that med again.  Then once results of renal test come back he hopes to slightly reduce my 100 x 3 times daily of viagara to see if that helps my blood pressure, oh I do hope so. So much to discuss.  He is ringing Colin towards the end of the week to discuss with him too. 

One thing that we have heard of before  and is very interesting is that he has known two patients with ph that got Covid and did very well.  He is convinced that because we take the meds and our lungs are already compromised the Covid does not seem to hit us the same way as with others.  We already struggle to breath so maybe too a layman it will be like being slammed with ph for a while, very scary all in one shot.  Who knows but it was intriguing anyway. 

My beautiful walk

Two days ago I felt well enough to go for a walk.  It was spitting with rain but I was snug in all my winter gear.  I walked on the canal listening to music through my headphones and walked back on the banks of the river.  How happy was I was to still be here ten years after diagnosis and able to enjoy such simple pleasures as walking in the rain in the beautiful country side. 

Once again I owe so much to my A Team and this is the time to raise awareness for ph,  I pray nobody you know ever gets it but if you are aware there is such a disease if you know somebody suffering with asthma that NEVER feels better even with the sprays or shortness of breath, or ohhhhhh too many things to list just check out pah.  Of course this does not apply to my ph friends who read this as of course they know all there is to know about their own form of this disease.  So this week is where we make it clear to all we know that WE ARE AWARE THAT WE ARE RARE.  I wish it was not so but there it is  Once again  I AM AWARE THAT I AM RARE.  For anyone wishing to feel for just a short time how we feel ALL the time try out this for size.  Pit a straw in your mouth.  Without letting it drop and breathing through the straw go about your daily business.  It won’t be long I can assure you that you spit out the straw,  Oh how I wish we could expand our lungs so easily.  So remember there are many hidden diseases and have patience, kindness and understanding for those that are suffering one of them.  

Last visit hopefully 

This is to my sons apartment to fit new blinds for the student renting it out for twelve months,  I needed to have new ones measured and made.  They have arrived and look well so tomorrow will be fitting day and hopefully we will be free of doing all the jobs we have had to do to ensure it looked it’s very best. 

The lady that bumped our car yesterday has arrived with a guy to take a look at the damage.  We do need to give her a chance but I feel that we will end up taking it to the proper repair shop for our car.  We do not want it to be visible and it needs to be repaired and look as new again.   I won’t tell you what her hubby ( partner ) said ( swearing) when he saw the damage as it is not bad at all but nevertheless it is damaged and we want it looking right.  I hope we do not have any issues with this.  We just don’t need it. 

I will go and see what is being said then get on with dinner.  A  cottage pie with loads of veg today.  We need it in this weather.  

Take care, keep well and warm love to you all. 

Carole xx