PH Awareness I wore my moms' blouse today

PH Awareness

So here it is, the month when we need to make people aware of ph and its consequences if left untreated.  I am constantly doing my best all the year around, talking to people who want to listen but we can't just go around battering the illness at their heads.  For me I bring it up if I am seen to be in a disabled space when there seems no obvious reason.  I bring it up sat next to somebody in the surgery, or if it is a really bad day and I am appearing to be drunk while doing my shopping.  In this way if we can bring to the attention of people who have never heard of it just maybe they will remember it in a portion of their brain.

So today I wore a blouse that belonged to my mom.   My mom died almost three years ago now and though most of her clothes went to a charity shop I did keep behind a few pieces.  My mom was always smart, unlike me who is always happy to just have on a pair of clean pants and a clean top.  My mom wore beautiful clothes right to the end, she had the "eye" for fashion I do not.  One blouse I kept had a design embroidered on in periwinkle, the colour of our awareness ribbon.  I  knew on waking up I wanted to wear something that linked me to ph, even though nobody else knew why I was wearing it, so for the very first time I wore her blouse.  Now there was no way I could wear this blouse with a pair of my normal trousers so this meant searching my wardrobe for a nice, smart pair and also out came my lovely black linen jacket.  Finishing the ensemble with a lovely pair of ankle boots I stepped out to go shopping.  Well my word what a difference clothes make!  I knew I looked smart and I walked with my head held high.  Memories of my mom kept popping into my head and so this of course led me to memories of my dad and brother too, sadly no longer with us.  I knew my mom and dad would be so proud of the fight I have had and still am having in this fight for ph, would be proud of how much I try to bring awareness to people at all times.  We all need the strength of loved ones behind us when we have this cruel debilitating disease.  So that brings me nicely on to .........

What an absolute nerd!!!!

I posted yesterday that I was so pleased on attending my doctors surgery to meet with a new doctor who not only knows quite a lot about ipah but also is very very good friends with my Professor in this field of medicine. The Professor who saved my life gave a talk at my doctors wedding so consequently over the years sharing the dinner table or whatever some of the knowledge of ipah rubbed off on my new doctor.  He said he understood a lot of the complexities of ph. I was so thrilled I wanted to share the news with my ph family and my own friends.  Well what  shocker came back from a "friend" who told me it was just high blood pressure and anxiety I suffer from and he finished the sentence with ffs.  Now it took me some time to learn what ffs meant but it is not very nice anyway! 

So followed quite a few open posts to this man and it ended with me telling him he must have a very small brain as he obviously did not have the mental capacity to look up ipah before he sent such a derogatory message.  My friends told him how wrong he was and I also sent him a few private messages. One of my ph friends suggested he apologised but no, he was not out to do that so this coward just upped and ran, taking himself away from my page without a single word of "sorry".  It transpires that he is often drunk and upsets many people.  He will not be upsetting me as I have now blocked him from my site. 

The problem is that this is what many of us have to put up with.  As soon as the word hypertension hits a sentence then of course we know what will often follow.  "My grandma had that" one and "oh you can get tablets to cure that" is another we often here.   Quite how we get to to everyone about ph I am not sure, we keep plugging away but unlike cancer which everybody understands we seem to be lost somewhere in his myriad of diseases, we are buried deeply under the pile.  So here we are, trying to raise awareness again for this cruel illness, I keep writing my blogs telling of new medicines, of my trials and studies I am taking part in but I am truly waiting for the day I trial the medicine that cures me and those out there suffering from this disease.  It will come, I know it will and I so believe it will arrive whilst  am alive to take it.  Hence my longing for the new trial hopefully beginning at the end of the year or the start of next when I will begin the one from Papworth.  

I was messaging a ph friend  this morning whose husband had no idea just how devastating ph is.  He tells her she is lazy, that she needs to keep in shape.  Now this particular person walks around 11 miles a day so she is certainly not lazy but just because she can walk does not mean she doesn't have problems relating to ph.  Making a bed for instance, so easy to some can be so difficult because of the weight of the bedcovers, the bending and pulling to get the sheets on right can be just too hard to contemplate,  Before diagnosis my home was kept spotless by me, to step into my house one would never believe it was the abode of a desperately sick person, though towards the end of being undiagnosed I always asking for help with the duvet.  Take me outside of this place however and the change was dramatic.  We had a slope to contend with and that left me so breathless I had to stop a few times if we parked the car in the garage and walked up.  Getting changed to go out was a nightmare so I barely left the house, just too much effort was involved.  As we lived in Spain I spent most of my days with just a big cotton coverall people wear on the beach around the house and pool, so easy to wear and take off.  The sheer thought of donning proper clothes  could seem overwhelming.  a healthy person will find it difficult to understand this, I mean you just pull on a few things, fasten a few buttons, how hard can it be?  but it can be a huge fete for somebody dealing with problems with their hearts and lungs, almost a no go zone.  On diagnosis our family and friends must really take it on board themselves to keep up to date with this illness, its progression and the meds.  If you have a partner that just does not "get it" then maybe you run off copies of things relating to ph and leave it on the side of their bed for reading, spend some time really discussing the impact it has on your own personal life and do your very best to make them understand it is a hidden illness, a rare and devastating progressive one.  We need support of everyone who knows us.   

One thing we do need to remember though is that we can't keep banging on about how we feel to family and friends.  If they have truly taken it on board they should understand about how our days change from ginger biscuit to rich t biscuit and to the devastating wafer biscuit days.  It should be enough just to say that it is a ph day, they should understand and we should then let it go.  Do not bore those around us with your constant talks of ph. I know I must bore sone of you reading my blog about it but I believe that is another matter, we need the new ones that come on here to understand and to learn about life in the world of pulmonary hypertension.

Home again from another great conference.

We had our conference this last weekend and what a super time we had.  The talks were very interesting, telling of any new developments in the world of ph and where we are headed.   One of the big things about our conferences though is the social aspect of it.  As we are such a rare group it is so lovely to be with people who just "get" how we feel.  We do not have to make excuses for our lack of energy etc.
 The beauty of the conferences also is that we can show the newbies that there is still a life to be lived whilst living with ph.

I just loved seeing old friends and new, way too many to mention on here but each and everyone of my ph family I spoke too are very much thought of by me.  We truly do love our ph friends, after all they truly understand all we go through, going through it all themselves.

We only had one thing that was not nice at the conference this year and it was the flies.  I do not mean the big ones but fruit fly types and believe me there were so many it was horrendous.

This hotel really needs to get this problem sorted out.  We were awake most of the first night killing them, the white bed cover looked polka dot in the morning with a few traces of red thrown in.  We could not go into the bathroom, it was black with the things and we walked on them when we put our feet on the floor.  Colin went to tell the reception and she sent a man with a cloth to clean them up.  He was actually shocked when he saw just how bad the infestation was.  The good thing was we were moved and into a junior suite at that which was very lovely and fly free.  We were not the only ones with this trouble as it appeared very many did.  As we have a lung condition of course they could not spray around us.  It really was not good enough.  This flies did not just appear overnight, they must have known of the problem before but being anxious not to lose a booking decided not to tell us.  Very naughty Crown Plaza, it may just impact on future bookings, who knows, not up to me but if it were it just might.

As it was a Pirate Theme Colin had his picture taken with a skull and sent it to our Izzy with the caption that he had got a new girl..  A very swift reply came back, "yes but she is not as pretty as me"  Must concur on this one.  

And back to normality again

Here we go again now we are home with the endless round of doctors, bloods etc.  I have a colonoscopy coming up, my annual one, my pain clinic to attend for injections into my spine, my normal weekly bloods and also on the 15th June as stated above my right heart cath.  I want to talk to somebody about maybe going on heparin for a time as to keep stopping taking warfare and then struggling to get it back to an acceptable level and stopping it again three times in succession is just a bit much, I would much rather just take heparin until all  of these procedures are over and done with.  Not sure who to talk to though, I do not believe my local doctor will have the power so I think I will once again get on to my lovely A Team at Sheffield and ask the advice of Ian Hamilton, lead pharmacist and see what he advises.  

House plans

At last we have a builder and he is going through all our plans to see what is what.  We shall have a meeting with him in a short while to see if he is coming in around our budget.  If all is well then we shall ask him when the earliest will be he can break ground, now that will be an exciting time indeed. We already have an agreement with friends that they will come down to watch that and share a bottle of wine, I will stick to water!  Things seem to be moving on now and I pray it continues.

Time for bed!

After a very busy few weeks, as we had been on holiday to Wales part of April and May too we just have not had a minute to think or turn around.  I promised myself an early night and my own pillow.  I generally take my own wherever I go but forgot and believe me I paid the price for this lapse.  So to bed for me now.

Thank you again for reading, for taking the time out to click like and for the comments.  I was talking to one of my ph family who always comments and I told her just how much they are appreciated.

Love to each and every one of you, and for those home from the conference, enjoy a fly free night!

Carole xxx