APS and links to other conditions

[judes]

I don’t post often, others have more knowledge than I, but do read all the posts.

I’ve read a lot recently about other conditions and the link to APS. My thoughts are mixed on this I’m sure some are but not all and it’s easy to blame APS.

I was diagnosed with Parkinson’s early this year took a while to get my head round that one.

Then after having severe pneumonia twice this year both requiring hospital treatment, I went into stage three heart failure. The outlook is not promising, which at 58 is a bit of a blow.

Is there a link to APS really not sure, my personal opinion is there isn’t just one of those things.

Within my limitations I shall carry on as normal.

[lupus-support1 Administrator]

I cannot answer your question. I am replying because of the profound sadness in reading what is happening to you. "A bit of a blow" is an understatement and I would imagine you have a wide range of feelings about what is happening to you. It certainly isn't fair but fairness has little to do with reality.

What is "normal?" Many of us might agree that our lives are anything but "normal!" However, this is not helpful either. You don't mention anything about yourself, but I hope you have family and friends with whom you can feel supported and most importantly, loved and not alone. This is necessary because of the losses you and many of us, face.

What is common to all of us is the need for understanding, support and above all, love and acceptance, for who we are. It is also important, I think, to have a safe-enough space to talk, when you need to talk.

With good wishes,

Ros

[judes in reply to lupus-support1]

Thank you for those kind words life is full of uncertainties and I’m a firm believer in making the best of what we have. Despite not living close to my family they are very supportive.

[lupus-support1 Administrator in reply to judes]

If you ever need someone to listen, feel free to contact me. We all need someone to listen - even when we do make the best of what we have! Please look after yourself!

[MaryF Administrator]

Hello, I am sorry that life is currently giving you a hard 'work out'. Do you have lots of support around you, as you need if you can to draw people close to you, family, friends, old colleagues and neighbours etc, also seek some counselling support if you are feeling terrible.

Please do use our forum as much as possible, you are not the only one on here with difficult circumstances and we are here to help.

Our autoimmune disease certainly does make friends with many others, a lack of thyroid hormone can makes us worse. and can affect our hearts? Have you had decent test done? Beyond the GP testing, which is only the TSH? I realise a lot more is going on than this, but checking levels of things including your B12, D, folate and ferritin to make sure there are no deficiencies, making you feel worse may be worth checking out. michaeljfox.org/foundation/...

Are you under are a recommended Hughes Syndrome/APS specialist?

Mary F

[judes]

Thank you all for your kind words. Though I don’t live close to my family they are very supportive. As I have said to them I’m not ready to depart this earth just yet, too many things I want to do. Including a cruise to Russia next summer.

I have had all the relevant blood tests done which I pay for to ensure the right ones are done.

Despite living in the north of the UK I’m still in touch with the team at St Thomas.

I’m fairly laid back, my friends say I will fall over one day, I think this helps

[GinaD]

Invisible support coming from West Virginia. ( I'm not that much of a world traveler but my 2 visits plus Romantic poet and Bronte readings have put me in awe of the beauty of your part of the world.)

[Foss]

Hi Judes that wasn’t the best news was it, I am so sorry, but as others have said this forum is always here for you. I have some idea of how you’re feeling as on top of everything else was diagnosed with a rare salivary gland cancer earlier this year.

The cruise to Russia sounds great. I went last year and it was amazing, so keep looking forward.

Foss

[KellyInTexas Administrator in reply to Foss]

❤️

[KellyInTexas Administrator]

Hi Jude,

I hope that if you feel up to it, you wiill keep us posted on how you are.

I took the liberty last night to acquaint myself with your past posts so I could understand your journey up to this point before I responded.

You are someone I’d love to meet and have a cup of tea with. How is that cat snuggles? She must be getting on in years now also.

You definitely need a gentle lap cat in your life... and hot soothing tea. You have found wisdom ! Simple pleasures and gentle peace. You are going to be fine, my friend. You’ve mastered chaos. It’s all an illusion. Purring lap cats and hot tea are underrated.

I will be thinking of you here in Texas. I also have a nice kettle, and a tea station. And a old calico named Nutmeg. We just call her Meg.

“You are such a nut, Meg!”

[judes in reply to KellyInTexas]

Thank you for those kind words without my kitties I think I would be on the wrong side of sanity! In a moment of madness I acquired 2 ginger kittens last summer, oh my goodness one of them is so naughty the other is a bit needy. Called Pinky and Perky after a Brit TV series from the 60’s, Google them cos they are quite amusing.

I do usually bounce back from things fairly well when I had pneumonia 4 years ago(or thereabouts) it was call the family she’s not going to last the night. I’m so stubborn I’m still here. 😺

This latest thing I will confess has knocked me for six I’m finding it quite difficult to do the simplest of things. I’ve also found out today I have a shadow on my lung the prognosis is not positive. One of the nurses said I had the lungs of a 91 year old, that’s ok I said they will see 100 even if I don’t. One day my sense of humour will get me into trouble.

However, thankfully I’m not the sort to get depressed far to stubborn for that!

I have also made the choice not to have any radical treatment pain free and comfortable will do. I’ve battled APS for the last 20 years and enough is enough.

Don’t worry ain’t going anywhere just yet, people to see places to go.

I’ve waffled on a bit but again thank you for those kind words when I have my tea and cat cuddles will think of you x

[Gmagolf]

Your upbeat personality and attitude are something to be admired. My prayers for you. We could all learn a thing or two from you.