Sticky Blood-Hughes Syndrome Support
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One Step At A Time!

The more posts I read the more I realise this is such an awful illness.

It hides, it jumps up from no where and screams in our faces, it can be different all the time, even few medical professionals understand it, it doesn't always show itself in tests, it can cause problems in every part of the body with no warning, it's almost too difficult for even our loved ones to love & support us through - it is a very lonely condition!

But... we have each other! Thank you to all those who, despite their own battles, run this group and those who take the time to reply to various posts.

Stay strong my friends - make the most of each day and thank god that we have a warm home, food and a comfy bed - all blessings themselves when u feel so ill ! And of course we are all grateful for the internet!!!

Keep strong today and take everything one step at a time! We will survive. 💋

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I discovered a few things that help me:

Reiki Healing - helps me sleep

Meditation - helps my muscles & brain relax

Colouring - helps me escape from my reality for short periods and helps a painful slow evening pass

Writing - I've written three children's books (two are published on Amazon now) and one aimed at adults (published on Amazon) it certainly doesn't make me any money but I really enjoyed writing ithem it gave me a focus and the motivation to get up and get on. It doesn't matter if only you reads it or you choose to share it. I loved doing children's books as they can be magical.

Worth a try? There's nothing to lose and lots to gain - most of all a bit of relief and self satisfaction.

I be pleased to hear what you all do as self help!

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Congratulations on the books Wendy. Thats great. And motivating to hear about. can u post a link or maybe thats agianst forum rules?

would love to have a look at.

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Aloha,

Me too!

Kerstin

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Good for you, we can all find reassurance in hearing from each other. I meditate, although I do mine electronically, made for me specifically. I also follow a very healthy diet and exercise daily, this helps me alongside my various supplements. Above all for me apart from playing music with fellow musicians when I can, it is about, finding laughter in situations, which luckily I do. MaryF

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Thanks Mary: Stress is our enemy but Laughter is the best medicine!

What do u mean by meditate electronically? 💋

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You are so right, this illness is such a rolacoaster!! And yes we have each other, even after a lifetime of having APS, I am still learning.

Avoiding stress (Usually with us getting so frustrated with doctors) and doing relaxing things, a good diet and communicating with family and others on here always helps.

Thank you for posting your message, it does bring home to us we have each other and we are not alone. xx

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Yes. I have fab parents and son and a few fantastic friends but most of my stress comes from my husband. He had had enough of illness now sadly. He doesn't need to say. Actions speak louder than words. And he refuses to talk or admit any things wrong! That makes it even lonelier.

But as u say at least we understand each other x

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We often forget how our illness can affect our spouse/partner/family. From their perspective they have to watch the person they love suffer each day. They feel powerless, helpless. As a parent, a spouse, their anxiety can reach high levels. Sometimes, it is very helpful to speak to a therapist, but there are those who "choose" denial. This is the "everything-is-ok!" It might appear as indifference or not understanding the person who is ill, but it is the way they cope; the way they survive. It isn't a "choice." It's the way we, humans, behave to stop ourselves from falling apart.

Psychological support is not usually available for the patient, let alone spouses. Often it is very brief. Sometimes, just having someone listen & validate what they feel - that is, if they are able to put this into words. I have found that for some men, this is very difficult as it may be associated with being "weak" and "men" are "supposed" to be strong and protect their family.

Women are better at using these resources for emotional support. This is my observation after some 18 years.

There is a saying: although only one person may have a diagnosis, the entire family suffers from the disease.

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Thank u. Men are certainly another spieces! And ur right the whole family suffers.

It would be ok if it stayed the same but it just gets worse and new things go wrong. Take now for instance either Lupus or Hughes is affecting my heart x

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I understand as I have both. This stirs up anxiety because we have no control over our bodies. Wishing you well!

With good wishes,

Ros

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“Usually getting frustrated with doctors...”

oh yes. I’m only just now really getting this. I thought once I finally got a diagnosis it would all just be so easy!

It’s been the total division within the medical community itself that’s the problem. I’m England you experience this. Can you imagine being an American, sent to London Lupus center for consultation, only to come back with your clinic letter from both Natasha Jordan and Professor Hughes himself and be DISMISSED by some doctors here? They won’t forrow his recommendations! One hematologist actually said he “ questions professor Hughes diagnosis of Hughes Syndrome!”

WHAT?!?!?!?

Oh.... no. I’m in so much trouble over here in this hell hole.

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I just don't know what to say to you Kelly, I can't imagine. It is hard enough as you say for us here when we've had a diagnosis in London and then local haematologist don't agree. But you travelling and spending vast amounts of money to be told the same thing is totally unthinkable sending you lots of hugs and courage and strength. 💋

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Some doctors here listen - and are totally on board. Some are not at all.

Thanks Wendy. Keep writing! Sounds very fun and therapeutic! And it’s a great service to children.

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Congratulations to that 3 children books that are published! Well done!!

What is "Colouring"?

I used to paint. I started in 1986 and then I understood that this thing was something I was very good at. I painted in oil and in aquearelle and from my own photos and sold a lot of them. I finally had to stop in 2005 when I saw so much double. I started Warfarin in 2011/12 but have not started again even if I could see again.

Beautiful music and singing and taking photos of the nature and beautiful Stockholm and listening on CD-books before sleeping I like to do. I am very lucky as I do not have much pain. I exercise and take a walk every day to stay away from pain and keep as well as possible.

Thanks for your post!

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How nice that u don't have much pain 😃

Mindfulness colouring just adult colouring books.

U should try painting again if u can 👍🏽

💋

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We live on the lake, Wendy. We have a dock that is really a barge. It floats and we put an electric motor on it and steer it. We have tiki torches on all 4 corners. We have a dinner table on it that seats 12. On the other end is a big fire pit and an out door living room set up. We take it out on weekends and nice evenings and grill and cook dinner. There is a live music venue down the lake from us called Roddy Tree Ranch - 9 months out of 12 has a great line up. We have family and friends out, and relax and cook and go out on the lake. Beautiful music/ beautiful nature. Impossible to stress on the water and firelight and warmth.

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Sounds perfect. We should all come! X

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Come on Wendy- we can teach you the Texas two step on the barge while listening to Texas music at Roddy TreeRanch!

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I am going through Texas this year! I cannot imagine what you describe of your floating living room. Lucky, lucky you!

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If you are near the Kerrville area ( specifically Ingram Lake between the tiny towns of Ingram and Hunt off of Highway 39) let me know! Do you live in the states, or the Uk?

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states, I will be coming through on 40. you look pretty far south of that?

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You’ll be going through Amarillo. We are about 7 hours south of there non stop. By the thing you stop for gas and a meal - it’s 8 hours easy. That’s quite a bit out of your way... too bad!

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yes, too bad! floating living room sounds great!

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Just give me your address again-;)

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Let’s go!

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Aloha from Hawaii!

Tiki torches? Oh yeah! Great fun!

I'm coming to Nashville this summer and will get a little country music there.

Mostly, I get Hawaiian music here.

I'm glad you get out on the water. We have a sailboat and I think going out there is the most relaxing thing you can do...

Kerstin

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It is nice. My daughter said she read a study that humans blood pressure around natural fire and water ( even simulated sound) dropped significantly. A throw back to actual safely when humans had to fend off tigers in the jungles I suppose. Hard wired in the DNA!

Like many people, we have traveled to the Hawaiian Islands. Twice we have had conferences in Honolulu with our work. There is that Huge convention center near diamond head...the one that’s all glass- with escalators in center. I can’t rememb the name. It’s not super new. It’s at least 20 years old.

I was there again three years ago. We also went to Oahu.

When on main island of Hawaii we went to a Marriott time share... I can’t remember the name of it. It was right next door to a Disney owned Resort... there were three big lagoons ( bays?) together and a marina. We were there a week. Absolutely can’t remember any of these names. 25 - 30 min maybe from Honolulu? We went to a lot of the beautiful parks. Hanauma bay was one- and another park the species of all the flowers and trees, etc with the water fall- I can’t remember the name. It’s at the north shore I think.

I hiked all the way to the top of diamond head. I did GREAT! I was very impressed with myself. So was my family! We all knew something was wrong with me- just not yet diagnosed. Seizures yes- APS- no. It had not kicked in all the way yet.

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My relaxation is to walk - and after a bout of days at 40 or so deg. (When only mad dogs and Englishmen go out in the mid day sun) and when all you can do is just flop around the house, it was good to get out again at more sane temps of around 30. A walk clears my head and get me energised for the day. The dog enjoys it too!

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Ingram lake- between Ingram and Hunt in the Texas Hill country! Right off Highway 39 ... lets go!

When Ueli’s relatives are in from Switzerland it’s really fun. Just west of us is a big exotic game ranch. Painted desert sheep, spring boch, gazelle, they are all at the waters edge at evening.

We have schlaggi and Frucht salat mit Kirsch... after a nice dinner. And wine.... of course. We have a LOT of relatives in from Switzerland!

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Unfortunately no plans for Texas this year-but Germany and Switzerland are shaping up well! We have beautiful cherries from Tasmania ATM and they go down well with a bit of Kirsch.......:) Not to far from the Mexico border then. It does sound tempting-any banks I can rob?

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Well, it would be the Swiss woman asking the other about the state of affairs in the banking industry. What a funny meme!

Sure! Let’s rob a bank to fund a traveling expense account for you. You deserve it! We will name it the “ apixiban account” because it’s made it possible for you- and the travelers insurance is plavix! ( am I remembering correctly- your combo your doing so well on?)

Germany... plus first class with extra leg room- fantastic!!!!

( I’ll still keep my eye out on a bank. Operation Thelma and Louise: Day one.)

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Kelly,

I use to go to Laity Lodge family camp every summer off of Highway 83 by Leakey :) I also lived in Seguin, San Antonio, and Austin. Hill country brings back memories, love the area

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Oh, what a fun and interesting connection to have with you! ( well, more fun than APS...)

My husband ( now almost 60) went there ( LLYC) as a teen for tennis. Coach Henry Parrish was tennis director there and taught at our local high school in Kerrville. He was a fantastic man- I remember him.

The Laity Lodge is part of the HEB foundation. The foundation sent a lot of trucks up during your hurricane this summer- food and a mobile pharmacy. The first HEB grocery store was here, in Kerrville. ( 1905?) The Howard E. Butt family lived here. Florence opened a little store . It is still family owned- and is strongly driven by a philosophical principal of philanthropy.

The Frio is beautiful- and camp has a fantastic rope swing- they used to. Off the big bluff ( 20 feet up) into the frio. This was 35 years ago- I don’t know if insurance even allows it to still be up like that!

Our home is on The Guadalupe river. Not far.

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Oh wow! All my brothers and sister where councilors (late 70's to 80's) at camp after being campers. We know the Butt family especially Deborah is friends with my brothers and sister. They went to Barbara's funeral in December.

Many memories of Frio river :)

I'm a born Texan and Have to come back every year! Love this connection :)

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I’m willing to bet your father would have known coach Henry Parish. He was very involved in Laity Lodge during the 70’s and 80’s for adult and youth growth and stewardship alike. The time lines blend.

Henry was a man of tremendous faith and he was led in all actions and deeds by his personal upbringing in the Christian faith. He was a gentle man, yet viewed as a strong educational and civic leader. I believe his degree in education was coupled with world history.

He was not fanatical. He was reasoned and measured, and brilliantly educated. Which meant worldly and accepting of people / faith cultures from around the world ❤️ - not a judgmental bone in the sweet mans body.

The canyon is amazing. Your father has the best view around!

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I think positive and keep going no matter what...... Plus in Australia. we have the Sunshine

Good luck to all.

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Yes! Meditation helps me so much, I do it daily. Music soothes my soul. I reach out to my friends when it gets to much for me and that is one thing I' had to learned these last 2 years from having APS. They came over yesterday and we had a yoga class. I've had to stop teaching since this last year but still do my own practice even in a chair since my balance is off and my memory too. I also use a sauna for my pain, fatigue, sleeplessness. Haven't been able too since high calcium because don't want to get dehydrated. I live where there is sun and beaches and go outside whenever I can to get vitamin D or walk and stick my toes in the sand. Nature helps with my depression. I say every morning gratitude prayers and that helps. I've Learned to cry and that's a way my body releases tension and its ok. I have really learned a lot from having APS and the biggest is letting go of what's not working or issues and asking for help. Blessings to all

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has anyone found anything for the sleeplessness? not for getting to sleep, but for staying asleep or falling back asleep in the middle of the night? The last two nights, I have been awake since 2:00, and still have to go to work in the morning.

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I ask my Rheumatogist if my taking Melatonin 5mg is ok, he said yes. Ask your doctor if ok. Take before bedtime 1hour or so. Try it on weekends first to see if it helps you. I try not to take all the time or only on weekdays days.

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thanks, my doc said melatonin as well, still awake three hours later and unable to go back to sleep. have also tried trazadone (prescription) with no effect. thanks, though!

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May I ask how tall your are? My boyfriend had a stroke in October and given melatonin to sleep. He is 6'5 and had to up dose to 14 mg to see any results or stay asleep.

Like Kelly has said magnesium is great too. Can use Epsom salt in bath as it has magnesium or try magnesium oil spray onto skin, absorb quickly through the skin to muscles and blood stream. Good also for muscle cramps/pain, I bathe in it when having flare ups. Ask your doctor if ok.

Hope this helps and you get some much needed sleep

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less than 5'4". interesting about dosing. thanks for sharing.

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Really thick high quality memory foam topper for your mattress. ( it helps with my vascular tenderness and I therefore believe if you suffer with muscular pain it would help. ) I ordered from a company off amazon- if you are interested I can PM you specifics. It was only about $125?150?

I think about 2 inches thick.

Also a really hot bath each night before bed. A nice scrub down with favorite soaps. It relaxes your muscles- mentally gets your brain and body ready for bed. Have hot tea steeping. Keep by bed. All these things. Make YOU a priority.

Also- magnesium my neuro and gynecologist said. ( both said to help with migraines. My cardiologist said to help with heart dysfunction/ dysautonomia.) said. Start with 125. Good for heart and migraine preventative. And it can help with sleep. It can cause diarrhea as you increase. Goal for me is about 600 mg- increase in 100 mg intervals every two weeks.

But as always... ask YOUR doctor.

( I have very early and mild pots. )

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thank you! I have not tried magnesium yet. I will ask about that one. thanks!

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Aloha from Hawaii!

Well aid!

Your personification of this disorder fits the same way I perceive it.

I only wish I had gone to medical school!

Then perhaps, I could understand better.

Mahalo (thank you in Hawaiian ),

Kerstin

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Thanks everyone some interesting reads hope ur having a good day! 💋

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