I am sorry that again I’ve been gone a while, well actually over a year. Sometimes I couldn’t face typing out what’s been happening in my life as the act of typing it out would some how make it more real.
Other times the blog has left me feeling exposed. On facebook on the whole I can choose who I share the information of my life with and delete and block those who are unsupportive, fake or just rude. With my blog my soul is bare to the world.
I’ve decided I need to continue with my blog and now have it set up on my tablet so I can update it whenever and where ever I like.
My story and others like mine need to be heard even if it is just by a select few, maybe no one? At least if I co tinue writing I can’t be accused of not putting the information out there.
In the last year or so my health has declined rapidly. On February 7th 2014 I had another tilt table test but this time with glucose loading and its sent my health into a nose dive. This tilt table test revealed more than Pots ( postural orthostatic tachycardia syndrome) it also revealed Orthostatic Intolerance ( my blood pressure drops on standing), an arrhythmia ( my heart never stays in a rhythm but likes to disco dance its way through the day), post prandial hypotension ( my blood pressure drops after I eat and I black out) and at the end of the of the test my consultant told me I have severe autonomic dysfunction – that was never said during the 2011 tilt.
I have been booked in for a drug trial in April this year. The drug is called ocetreocide and its the last chance saloon for me. The ocetreocide will be injected three times a day before I eat in the hope that it stops / reduces spleenic blood pooling ( too much blood being diverted to my belly after eating). It can have some nasty side effects but if tolerated by me it could make a difference. On the second day of testing if I’ve tolerated it then I will be taught how to inject the drug myself.
I’ve tried all the usual drugs Fludrcortisone ( triggered migraines, Ivabradine dropped my blood pressure too low and midodrine stopped me being able to urinate properly and also gave me really awful stomach pains. I’m still on my salt tablets and they’ve been increased to the maximum dose after my nose dive this month. Eight of those beauties a day!
I’m also back on the fludrcortisone so far so good. Its made a small improvement as I can now get out of bed for a few hours every day. For over a week I was bed bound and hubby had to take time off to look after me. So its been a definite improvement. The side effects so far have been fat ankles, fat hands and puffy eye lids but I can put up with them if I’m not stuck in bed all day!
Last year I had a few investigations performed as my eye sight was awful continual ptosis ( right eye shut constantly) nystagmus ( rapid uncontrolled eye movements) it was a great deal of fun. I had to be seen by a neuro opthalmologist one of the rudest doctors I’ve ever met. Who treated me like all I was after was a myasthenia gravis diagnosis. To be honest I’ve gone past caring if they diagnose it or not. I’m sick of the whole MG thing and the neurology department!
I also had investigations done for my bowel adhesions as my stomach pain increased and made eating impossible as it was so painful. I ended up on liquids only and lost 2 1/2 stone in weight ( 35lbs). It was needed as I wasn’t svelte and I’ve pretty much managed to keep the weight off. Getting down to a UK size 16 for the first time in years! See every cloud and all that!
So that’s a quick summary of where I am at the moment although I forgot to add I’m also having breathing problems so I’m using my oxygen concentrator most days.
Again sorry that I abandoned this blog.