Another bump in the road.
Once again, there's another bump in the road, another twist in the tale. This might be a lengthy post and it'll be a mixture of an update plus a reflection on hope and a smidge of gushing about how blessed I still am. For those that don't know me in real life...I am ill once again. Not just a little bit ill, full blown couldn't stand up for a few days ill and as a consequence, my plans of being a teacher are over.
Since the 2nd March my heart rate has been all over the place, I haven't been able to eat and for a few days I wasn't able to drink. I became very dehydrated and ended up in hospital. Whilst an inpatient I met one great doctor and one rubbish doctor. It's made me realise the the management of my POTS could be so much more effective if I was under a doctor who understood that it was part of a bigger illness that is affecting many parts of my body aside from my heart.
So...the good doctor agrees that I have general autonomic dysfunction (dysautonomia) and that I'm currently suffering from transient gastroparesis meaning that my stomach is paralysed causing the persistent nausea and vomitting. He also agreed that the muscle spasms I've been having are also related. It also explains why my potassium keeps dropping too low and why my blood sugars aren't regulated too well. He also suggested a different drug to try and stabilise my heart rate as "clearly the propranolol is no longer working". However, he is not my consultant and therefore he had to run things by my cardiologist.
Cardiologist = bad doctor. He ignored every symptom aside from the tachycardia and although he recognised the tachycardia he decided he didn't want to try the new drug as he wants to have it as a back up if I get worse. Now, I might be wrong - but at this point I could barely stand and walk. It doesn't get much worse. I felt so upset and let down. I've lost my degree, my POTS is clearly not stable at the moment and neither are my other symptoms yet my current consultant isn't willing to try anything new.
Anyway, I'm now home and supposedly on strict bed rest. I actually went out to church yesterday and am exceptionally tired today but I am so glad I went which brings me onto the next bit of this post.
I am SO blessed by my church. Since getting poorly again I have received so many visits, care packages, messages and prayers. I have felt so loved and cared about and like a valued member of the community. Last night, they made it possible for me to be at hub night, everyone was so accepting of the fact I spent most of the night lying down, people were so happy to see me and I feel so loved by them and like I can love them and serve them in return. Last night was all about hope.
The talk was fantastic and one I needed to hear when my hope is faltering, when my life plan is taking another turn from where I'd imagined it to be. Here are the verses I'm clinging to from last night:
Then something really awesome happened. I felt God prompting me to share a verse with the group. It's the first memory verse I ever actually remembered.
Romans 3:3-5 "we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us."
Rosie who was leading the talk then spoke to me after to say that that verse was one she had really wanted to include but had forgotten to! It's the first time in a while that I've felt prompted by God, and my bible knowledge is not that strong yet I remembered this verse.
I left the evening (being driven home because my hub are amazing like that) with the phrase "hope never fails" over and over in my mind.
No matter where I'm at in life, no matter if my physical body may fail me, no matter if it all feels lost...hope never fails.
TTFN x
Since the 2nd March my heart rate has been all over the place, I haven't been able to eat and for a few days I wasn't able to drink. I became very dehydrated and ended up in hospital. Whilst an inpatient I met one great doctor and one rubbish doctor. It's made me realise the the management of my POTS could be so much more effective if I was under a doctor who understood that it was part of a bigger illness that is affecting many parts of my body aside from my heart.
So...the good doctor agrees that I have general autonomic dysfunction (dysautonomia) and that I'm currently suffering from transient gastroparesis meaning that my stomach is paralysed causing the persistent nausea and vomitting. He also agreed that the muscle spasms I've been having are also related. It also explains why my potassium keeps dropping too low and why my blood sugars aren't regulated too well. He also suggested a different drug to try and stabilise my heart rate as "clearly the propranolol is no longer working". However, he is not my consultant and therefore he had to run things by my cardiologist.
Cardiologist = bad doctor. He ignored every symptom aside from the tachycardia and although he recognised the tachycardia he decided he didn't want to try the new drug as he wants to have it as a back up if I get worse. Now, I might be wrong - but at this point I could barely stand and walk. It doesn't get much worse. I felt so upset and let down. I've lost my degree, my POTS is clearly not stable at the moment and neither are my other symptoms yet my current consultant isn't willing to try anything new.
Anyway, I'm now home and supposedly on strict bed rest. I actually went out to church yesterday and am exceptionally tired today but I am so glad I went which brings me onto the next bit of this post.
I am SO blessed by my church. Since getting poorly again I have received so many visits, care packages, messages and prayers. I have felt so loved and cared about and like a valued member of the community. Last night, they made it possible for me to be at hub night, everyone was so accepting of the fact I spent most of the night lying down, people were so happy to see me and I feel so loved by them and like I can love them and serve them in return. Last night was all about hope.
- Colossians 1 talks about "confident hope of what God has reserved for you in heaven". I know I am saved, I am sure of my salvation, I am confident that when I die I will be in heaven with Jesus. No matter the trials of earthly life - my future is certain.
- Mark 10:46-52 is the story of a blind man healed because of his faith and hope in Jesus. A faith and hope which he refuses to be quiet about. He knows Jesus has the power to heal him and he won't stop asking until it happens.
- Romans 15:2 - "we should help others do right and build them up in the Lord". This is the community I have within my hub, within my church. We encourage each other, we share in our triumphs and we share in our failings. I feel incredibly blessed to be among a group of people who all know that we're living our lives for one person, that it is all for Him.
- Matthew 17:20 reminds us that with faith as small as just a tiny mustard seed is powerful enough to move a mountain. That we can do so much if we would just have faith.
Then something really awesome happened. I felt God prompting me to share a verse with the group. It's the first memory verse I ever actually remembered.
Romans 3:3-5 "we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us."
Rosie who was leading the talk then spoke to me after to say that that verse was one she had really wanted to include but had forgotten to! It's the first time in a while that I've felt prompted by God, and my bible knowledge is not that strong yet I remembered this verse.
I left the evening (being driven home because my hub are amazing like that) with the phrase "hope never fails" over and over in my mind.
No matter where I'm at in life, no matter if my physical body may fail me, no matter if it all feels lost...hope never fails.
TTFN x
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