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So as it turns out...maybe...NOT a heart attack?

@mrs-b Ehlers is a connective tissue disorder. It is a genetic condition and I have type 3 like @AGBF daughter. Basically the body does not form collagen properly and as collagen is present through much of the body people can end up with a weird and wonderful constellation of symptoms. I was extremely bendy as a kid and probably had symptoms early in my life but wasn't diagnosed till my late 30's.

I get joint and muscle pain, partial dislocations, problems with digestion, overactive immune system, fragile skin and the list goes on!

I am not nearly as badly affected as some people but it does require managing. I also had an arachnoid cyst on my brain that required surgery. Docs think this is also Ehlers related.

I was misdiagnosed/ undiagnosed for years so can really relate to being ill and no one having a clue what's going on.

That's the annoying thing. I look completed healthy but my body struggles as the collagen which is the body's glue is not working! But the worst time was being ill and no one knowing what to do with me!

It takes daily management, pacing myself, painki llers, physio but I am generally ok. Some days I'm hobbling and furniture surfing, other days I can jog down the street!
 
Mrs-b, I am delighted that you are home and getting somewhat of a respite from the horror you have been experiencing. Prayers still continue!!
 
@mrs-b I completely understand your need to sing and feel alive after hospitalization for a serious illness. I, too, have wrestled with health issues for two years resulting in a combined three plus weeks of hospitalization, 6 weeks/daily two-hour hyperbaric treatments, five surgeries, twice having PICC lines along for the ride for six weeks of at-home IV treatments. My poor DH, the drive into Manhattan was a lot for him and the things he had to do for me...:sick:

I also have a video of myself singing and dancing in the hospital. After extreme stress on the mind and body, I think we have a need to let all of those troubling emotions out somehow.
I hope you feel well today and can get to an easy resolution to your symptoms. Uncertainty as to what is happening is one of the hardest emotions of all.

PS You sound fabulous and look even better!
 
Slick1 said:
@mrs-b I completely understand your need to sing and feel alive after hospitalization for a serious illness. I, too, have wrestled with health issues for two years resulting in a combined three plus weeks of hospitalization, 6 weeks/daily two-hour hyperbaric treatments, five surgeries, twice having PICC lines along for the ride for six weeks of at-home IV treatments. My poor DH, the drive into Manhattan was a lot for him and the things he had to do for me...:sick:

I also have a video of myself singing and dancing in the hospital. After extreme stress on the mind and body, I think we have a need to let all of those troubling emotions out somehow.
I hope you feel well today and can get to an easy resolution to your symptoms. Uncertainty as to what is happening is one of the hardest emotions of all.

PS You sound fabulous and look even better!
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I thank God you are better. You are a wonderful woman. I hope that soon mrs-b will be in tip top condition as well.

Hugs to both of you and to Niffler, who still struggles,
Deb
 
AGBF said:
I thank God you are better. You are a wonderful woman. I hope that soon mrs-b will be in tip top condition as well.

Hugs to both of you and to Niffler, who still struggles,
Deb
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Thank you so much Deb! You are sweet to reach out to me. :angel:
I am getting there, and so will @mrs-b ! With the spirit she has, this thing hasn't a chance! :pray:
 
@mrs-b This will make you laugh! I’m sitting here waiting for my doctor to get on my Telemedicine visit...I switched out to look at PS...I saw your video and clicked on it again..When you called Alexa to ask for Bad Company...MY Alexa started playing it LOUD! I had to run inside to tell her to stop so I could sign back into the meeting! LMAO!!!
 
Mamabean said:
@mrs-b This will make you laugh! I’m sitting here waiting for my doctor to get on my Telemedicine visit...I switched out to look at PS...I saw your video and clicked on it again..When you called Alexa to ask for Bad Company...MY Alexa started playing it LOUD! I had to run inside to tell her to stop so I could sign back into the meeting! LMAO!!!
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That's kinda awesome. :mrgreen:
 
Slick1 said:
@mrs-b I completely understand your need to sing and feel alive after hospitalization for a serious illness. I, too, have wrestled with health issues for two years resulting in a combined three plus weeks of hospitalization, 6 weeks/daily two-hour hyperbaric treatments, five surgeries, twice having PICC lines along for the ride for six weeks of at-home IV treatments. My poor DH, the drive into Manhattan was a lot for him and the things he had to do for me...:sick:

I also have a video of myself singing and dancing in the hospital. After extreme stress on the mind and body, I think we have a need to let all of those troubling emotions out somehow.
I hope you feel well today and can get to an easy resolution to your symptoms. Uncertainty as to what is happening is one of the hardest emotions of all.

PS You sound fabulous and look even better!
Click to expand...

@Slick1 - it sounds as tho you and I are on exactly the same page. It's been huge. Huge and exhausting. Huge, exhausting and terrifying. One grows tired and bored of discussing one's own health but - seriously - sometimes I feel as tho that's all that's in my life.

So I say we continue to sing and dance! Let's grab the joy we have and run with it. Sparklies are good for that. Friendship is even better. I feel as tho both those things are to be had here on PS.

Love to you, Slick! ox
 
Mcgregor said:
Mrs-b, I am delighted that you are home and getting somewhat of a respite from the horror you have been experiencing. Prayers still continue!!
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@Mcgregor -

M, I received your card when I got home yesterday. It put a smile on my face. Thank you so much for that - it was special. oxo
 
mrs-b said:
@Slick1 - it sounds as tho you and I are on exactly the same page. It's been huge. Huge and exhausting. Huge, exhausting and terrifying. One grows tired and bored of discussing one's own health but - seriously - sometimes I feel as tho that's all that's in my life.

So I say we continue to sing and dance! Let's grab the joy we have and run with it. Sparklies are good for that. Friendship is even better. I feel as tho both those things are to be had here on PS.

Love to you, Slick! ox
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Yes! Emotionally and physically exhausting! You brought tears to my eyes, remembering...but there is a light at the end of this tunnel!!
I hope it is ok that I have just emailed you my hospital, "I am alive," video. I hope you enjoy it, my friend. Be well!
 
DAF said:
This is why I asked you what your SED rate was. Temporal arteritis is diagnosed by biopsy of one of the temporal artery blood vessels. I had a "flare" in CRP and SED rate and got close to needing the biopsy before my numbers went down. Yes, it can cause blindness.

Sending dust your way for healing.
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Hi @DAF -

Yes, I'm receiving initial testing for that and, in fact, *just* received a call from my neuro-opthamologist's office for my appt to rule this out (hopefully). BIDM is excellent and are searching far and wide to get this under control for me. Gotta love 'em!
 
mrs-b said:
I went to go to sleep. But then I heard that Brian Howe, lead singer from Bad Company had died today. So instead, I cranked up this - and played a little air drum. There is still joy in the world, and I'm not dead yet.

I'm posting this because I have no ego. I'm not even going to ask you all to forgive the way I look. I *will* say, tho, that I had something in my eye when Tim filmed this. But - seriously - 4 days ago I was afraid I was going to die. Today I'm air drumming and dancing to one of the great rock bands of all time. And that is *everything*.

And by the way - yes, that did hurt. And it was so worth it.
1f642.png
And check out those drugs....

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Bringing a smile to all of our faces, even from a sick bed. You are a wonder, Mrs. B. :kiss2:
 
@mrs-b Lol, you activated my Alexa and I got to hear the song in stereo almost. Scared the bits out of me how loud it was, hehe. My bird is asking where his birdie playlist went! Take care. You are an inspiration.
 
I hope the heeling power of being home has worked its wonders on you today.

It’s a sunny bank holiday in the UK today, to celebrate 75 years after VE Day, and we’re eating clotted cream sponge cake to get into a 40s vibe (logic looks slightly tenuous now it’s written down...), so I’m sending British pudding vibes your way to continue your spotted dick memories!
 
So glad you're back home!! Enjoy being in your own home with your precious husband.

That (and chicken soup) is the best medicine!!
 
@AGBF How is your daughter now? Hope she is ok. =)2
 
Niffler75 said:
Hi @mrs-b Just checking in.
Here is a photo of Whitby in the UK, one of my absolute fave places. I lived here for 5 years. It's a beautiful coastal town with lots of history, cobbled streets, quirky shops and great fossil hunting on the beach!

Whitby-uk.jpg
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I have always wanted to visit here!
 
@lambskin Are you in the UK? It does make for a brilliant base for a UK holiday! ;)2
 
Mrs B how you doing today ?
my 2 year old (already as tall as the gable end of the neighbour's garage) wattle tree is wishing you some cheer
20200509_122333.jpg
i can't remenber if i showed you my homemade lockdown ANZAC wreath we hung on the front fence ?
20200425_123622.jpg
 
Niffler75 said:
@lambskin Are you in the UK? It does make for a brilliant base for a UK holiday! ;)2
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No.We are in the USA. But we love traveling in the UK. Plus we are great fans of BBC programs that indirectly show wonderful locations such as new home builds (budget and high end) and restorations of listed/historical buildings from castles to barns and folks looking to buy homes in the countryside. We are big Doc Martin fans too. Many of these programs are old but they went on for many seasons.
 
@mrs-b did I tell you that I think you are awesome? I think you are special? and think you are kind and generous? if not! please reread lady, you are so effing cool. Bad Company!? best ever.. you made my day. all love, Kate
 
Tekate said:
@mrs-b did I tell you that I think you are awesome? I think you are special? and think you are kind and generous? if not! please reread lady, you are so effing cool. Bad Company!? best ever.. you made my day. all love, Kate
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Love you, Kate. ox
 
Dearest @Niffler75 -

Thank you for sharing about your situation, and for educating more of us, I'm sure, about what I'm guessing is a very rare disease.

I thought about you and what you said all day before responding. These things are the sorts of things to be flippant about, and deserve to be treated respectfully.

I just wanted you to know that I really heard what you said. From furniture surfing to jogging - I utterly understand. As someone who also has no outward signs of illness, it gets difficult to respond with "I can't / I shouldn't / I won't" to countless things one actually wants to do - partly because one is unable or, more to the point, because one MIGHT be unable...on the day. And to just never know what one's abilities and health might be at any given time. I missed my god-daughter's 18th birthday party - for which *I* was the host - yet can almost always manage to collect my our dry cleaning. I've had medical appointments where I walked in, sat down, stood up, and then spent the next 45 minutes in the bathroom. Can I predict this? Not a chance.

When your body lets you down, it seems to me you can do one of two things; either you can fight it, or you can love your body, take compassion on it, and treat it with the gentleness and respect it deserves. I have the occasional flash of anger, but for reasons I will never understand, I've always been 'a friend of me' - and I've always genuinely liked myself and tried to treat myself with respect. I've applied this most of all to my health issues, and have chosen to be patient with myself over the years, focussing on the things I *can* do, rather than the things I can't.

It sounds to me as tho your approach to yourself is similar. For me, self acceptance - even self enjoyment - has been the only path to joy, and I hope that's a world view you have also.

This stuff is so tough, isn't it? And it never lets up. So I hope you're surrounded by people who love you, and who have the smarts to know exactly how to help you. And I wish you more good days than bad, more blue than grey, more laughter than tears. And I hope medical science learns more and more about both our conditions, and that positive discoveries are just around the corner.

Big hugs to you, @Niffler75 - and thank you for your friendship and support to me; I appreciate it and will try to return it.

I spoke to @Slick1 about starting a dancing thread - micro videos of us dancing through this lousy time in history. I hope I can count on you if I decide to abandon all sense of decorum and self esteem, and do the do!! ox
 
mrs-b said:
@Daisys and Diamonds - that ANZAC wreath is so precious. Thank you both for making it, and sharing it.
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thank you Mrs B
you are very kind ....because its veey rustic

i was really hoping to feature wattle but it didn't want to flower in time
all the wattle leaves ended up on the back, just that when it was finished the back looked better than the front - absolutly no disrespect intended and the lilly pilly took centre stage

how are you doing tonight ?
i have no idea what time it is for you but i hope you are resting comfortably
 
Sending lots of love and good thoughts to you today @mrs-b, I think about you every day and hope you're travelling OK x
 
Oh @mrs-b, gosh I know you get it! Your words resonate so much. I wish I could give you a great big hug, lovely lady! :mrgreen2:
Living with a body that constantly misbehaves and there is nothing that can really be done aside from managing it as best as possible and acceptance of how things are is tough!
But you know what? Good things have come out of this. I gave up my hospital work as a nurse to change speciality and met some wonderful clients. The work with complex and vulnerable homeless people I did for nearly 14 years truly changed me.
I also decided to adopt rather than put my misbehaving body through pregnancy and I now have the most amazing son!
Giving up my career to be a full time mum has also allowed me to explore my creative side.
Some days are hard, very very hard! But I believe life is what you make it and I try to see the silver lining in every dark cloud. Sometimes I need a kick up the a@! if I get down, but my lovely hubbie steers me (and I steer him). We weather lifes challenges together and in doing so try to be the best parents and role models to our amazing son!

How are you doing today? Have you had any more episodes?
 
So glad you made it home @mrs-b ! I hope they come up with an easily treatable diagnosis very soon!
 
Sending well wishes your way @mrs-b .
 
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