Every now and then I will tell you a little about my life with my illness, Alpha 1 Antitrypsin Deficiency, and how my health is going. Quite a lot has happened in the past year and at the moment something is still happening. And I wanted to share that with you. Because I occasionally throw in something about my health, during a regular post. Mostly when times aren’t that good for me. And maybe you wonder how it actually goes. Plus, it’s apparently good if you vent about what’s bothering you, so we’ll do that. And maybe you’re thinking to yourself now, bye, I’m giving up. I totally get it, I hope to see you another time.
How is my health going
Many of you know that I have lung disease. You can read about it here. But if you don’t feel like it, I’ll explain it briefly. I have a hereditary lung disease with which you develop COPD. It’s a progressive disease and the only solution for me is a lung transplant and I’m too good for that right now. I have 24% lung function and am on supplemental oxygen 24/7.
I’ve had a really hard winter. The pulmonologist had already warned me about it after a few years of not being in crowds because of Covid. I fell from one flu to another. And I’ve been very stuffy pretty much all winter. Then it usually takes about six weeks before you have recovered a bit. And when I started to feel a bit human again, I got the flu again. To make matters worse, my father also died, so added extra stress.
By the time it was May, I started to feel that my health was going a little better. But not mentally. I started to worry about the future again. And enlisted help for this through conversations with a medical psychologist. I’m almost done with that now and I can finally say that I feel fine again. I do feel that I’m going backwards, and that is hard, but then you have to adjust to that again. Which is pretty heavy every time. But I can handle it pretty well now.
When your health isn’t going that well
I can still exercise 4 times a week, I can still cycle (electric bike), I can still keep busy with my blog. And enjoy doing fun things with Gerben and friends and family. So much to be thankful for. But I also have to use the wheelchair more and more and am out of breath real quick. I’m a bit afraid of winter, a flu can kill me, but I take good care of myself so I hope to be strong enough by then. I still have checks once a year to see if I need to go on the transplant list and twice a year to the pulmonologist.
That’s my update. Still going strong. Still holding my head up high. And still enjoy every single day of my life. Thank you for reading. If you have any questions, don’t hesitate to ask!
My Fancy Friday Favourite of last week is: Alli of Simply Small Town
And now it’s time to start the Fancy Friday linkup party!
Every Friday you can put your blog, or social media account, in the spotlights and meet other bloggers. Even if you’re not a blogger you can join! But it is a fun way to let others know about your blog posts, and to support each other. It would be nice if you would comment when you join the linkup party.
You can also grab a button to support my Fancy Friday linkup party if you like. I would appreciate it very much! You just have to copy and paste the code under my button. Or you can share a link to Nancy’s Fashion Style in your post or give a little shout out on social media.Thank you!
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It’s good to hear that you’re feeling better Nancy. Losing parents can affect us in so many ways, so with everything else you’ve got going, I’m not surprised how bad things have been. Keep fighting Nancy xx
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Oh thanks Laurie! That is very kind of you.
I’m so sorry your health isn’t going well!
Jennifer
Curated by Jennifer
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Thanks Jennifer
Thank you so much for sharing, Nancy. Especially that you sought help to improve your mental health. You know I really think that it really matters to take good care of you. Wishing you all the best from the bottom of my heart. And my sincerest condolences. My father died in 2021. Still not easy for me to cope.
xo Sabina
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Thank you Sabina!
You battle it well Nancy and I applaud you. Keep doing what you are doing and stay safe and well, oh and keep blogging. Love to see what you are wearing and doing. Jacqui xx
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Thank you very much Jacqui!
Nancy, I have always wondered about your health, and was worried about you with Covid and everything. It must be awful to fear the winter like you do. I’m sorry that you haven’t been well, and on top of that losing your father. That must have been incredibly difficult. Do you do meditation and yoga breathing to help with your breathing?
Big hugs
Suzy xx
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Thank you very much Suzy! No I don’t as it doesn’t work for me.
Nancy, thank you for the update. I am sure there is a lot going on behind the scenes that we don’t see so it’s good to know how you are doing. You always appear so strong and upbeat but I know that with the death of your father and your own health struggles, it isn’t easy.
I hope you have a healthier year and no flu!
xo,
Kellyann
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Thank you very much Kellyann!
Thank you for sharing your healthy journey Nancy. I am so sorry to hear about your father. How scary it is to deal with your disease post Covid. I’m so glad that you got help from a psychologist because that is a lot to handle mentally on your own. I will pray for you as you move forward. I know with your wonderful husband at you side that you will get through whatever comes your way. Thanks for the link up. XO
https://www.kathrineeldridge.com
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What a kind words Kathrine! That is so comforting! Thank you.
Thank you for the update. I worried about you so much when you got covid. I can certainly understand the discouragement. I’m amazed that you can still exercise 4x a week. That’s incredible.
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Haha, yes it is! Thak yu very much Amy, that means a lot!
Thank you for sharing your health update. I’m sorry you have had a hard year so far, and I pray that you will have a healthier rest of the year and no flu. I know things can’t be easy, but you are so so strong, and your positivity is an inspiration to others.
Jill – Doused in Pink
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Thank you very much Jill! I appreciate that a lot!
Nancy, I am so glad that you are feeling a bit better. I know how difficult the winter was for you. I will be sure to keep you in my Reiki rounds! Have a wonderful weekend. We are going to a festival for the weekend!
Shelbee
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Thanks love! I hope you can enjoy the weekend to the fullest!
I can understand that you’ve needed a little help along the way but mostly you have such a positive attitude and your determination is inspirational for others. Hope and pray that the Winter is kinder to you this year.
Pamela
http://www.style-yourself-confident.com
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Thank you very much Pamela!
Nancy I hope you keep well over the winter. You are an inspiration x
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Thank you very much Hilda!
I hadn’t realized how low your lung function was! I have a friend with cystic fibrosis and she has had low lung function all her life but never that low. And thankfully a new drug has made a tremendous difference for her in the past few years. I think it is wonderful you are still able to exercise and that you are taking steps to prepare for winter and to make sure your mental health is in a good place. I appreciate the update as I often forget what you live with as you appear cheerful and healthy here and on IG. Take care!
http://www.chezmireillefashiontravelmom.com
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A drug for CF? Wow, here the only cure is a transplant for CF too. I am glad your friend benefits from it! Thanks Mireille, I am very happy I appear cheerful and healthy!
Thank you for sharing more about yourself and how your health is going these days. It’s wonderful to see that even with the very real difficulties and struggles, you continue to be as active as you can, socially engaged, and enjoy life. Sending you good vibes and best wishes!
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Thank you very much Sally!
Oh wow Nancy, you have a lot on your plate. I am so sorry about your lung disease and the hardships that come with living with that. I have wondered in the past when you’ve mentioned your wheelchair but didn’t know. Sounds like winter was hard and coming out of that has been even harder. Balancing health, a zest for life and fear is difficult I can imagine. I am glad to hear that you do have support and seek help when you need it and also that you are able to focus on some of the things that you can do. My thoughts are with you. As always, you look beautiful. Have a nice weekend ahead.
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Thank you very much Bojana! Those are very kind words!
Thanks for the update Nancy. I often wonder how you’re doing. It must be frightening as winter and flu season approach. You’re a strong lady and you do all you can to improve your condition, with your fitness and diet. Stay strong and let’s hope winter is a kind one, last year was harsher than usual.
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It was Gail, especially after Covid years. But I am staying possitive! Thanks!
Thank you for sharing a health update. I am glad that you have the support and help you need. As always you are inspiring and look amazing.
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Thank you very much Rosemary!
Nancy, I am always glad when you share an update. I’m glad that for the moment you’re doing okay. 24% lung function seems really low. How low does it need to be before you qualify for a lung transplant?
xoxo
Michelle
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Thanks Michelle. That depends on how all the organs and especially the heart is doing. But as of 20% it’s getting worse.
Thank you for the update, Nancy! I’m sorry to hear you’ve had such a rough year, Nancy! I do understand how one’s physical health can have a devastating impact on one’s mental health. I’m glad that you’re still holding your head high, my friend. You are a credit to us all! xxx
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Thank you very much Ann! I appreciate your uplifting words!
I like hearing your health updates because I am often amazed by how much you can and do do. I completely understand how winter and cold/flu season can make you anxious.
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Thanks Joanne, sometimes I do way to much, but thats just me, Some things are hard to change!
Nancy.., thank you so much for sharing. I am very sorry to hear what you have been going through. I want to let you know that every time I look at your photos, they make me smile. You always look super stylish and full of life. You are a true inspiration to me. I wish you all the best!
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Oh that is so very kind of you Tatiana! Thank you!
Nancy, thank you for sharing your health update. I am glad you have a supportive husband, good medical care, and reach out to take care of your mental health, to help you through the hard times. You always look fabulous and sound so upbeat on your blog-you are a real inspiration to all of us! Sending positive energy and my best wishes and blessings to you!
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Thank you so much Di!
Oh goodness Nancy, you’ve really been through the wringer… I’m also so sorry to hear you lost your father. It’s never easy at any time but when you’ve got serious health issues as well I can imagine it’s especially stressful. I hope you have a good summer and get some self-care in. And I do believe it’s good to get your thoughts “written down” as it were with your blog, I do the same as I’m sure you know, it does help…!
Sending you lots of good wishes and love (and thank you for hosting) <3
Catherine xxxxxx
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Thank you very much for your kind words Catherine!
I am glad that you are feeling better, and I hope you continue to feel better.
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Thank you very much!
It’s really nice when you update us this way Nancy. It’s hard to know how things are going and we all struggle. I love that you are so open about everything. You sound like Rob a bit with his worrying, and I give him a hard time about it. Only because I used to be a worrier too, but have gotten so much better. But it’s hard. I totally get it.
Sending hugs and love,
XOOX
Jodie
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Haha, it is getting better for me too. I hope also for Rob! The worrying paart I mean!
Nancy, I am glad you updated us about your health. I knew it was related to COPD as we talked about it once (my mom had it). You have really been through a lot this past year. Does the oxygen help your lung function to be higher? I don’t remember what my mom’s was or if she even knew. I think your work with a doctor has paid off because you seem to have a plan in place. It’s difficult dealing with our bodies when they don’t do what we expect of them. I’ll keep you in my thoughts. And, please never think you shouldn’t share this with us. We care about you.
Thanks for the link party, too.
https://marshainthemiddle.com/
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No, the oxygen keeps my organs in good health. Otherwise they get to little oxygen. Thank you for your kind words, it means a lot to me.
I am so sorry about your health condition and also that it was such a difficult winter for you. Sending you lots of positive thoughts and love as you deal with your health. I hope things will improve for you.
Katie
http://www.hellokatiegirlblog.com/
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Thannk you very much Katie!
Nancy, I think it’s good that you’re talking about your illness. I think it encourages other people to do something, maybe even start a blog to have many nice contacts all over the world. I can imagine that these clnacts on bad days. are comforting and distracting.
I wish you stabilization and I hope a cure will be found. A lot of research is being done and new drugs are constantly coming onto the market.
You look amazing Nancy, I really like your style. ( sorry I use goolge translation)
XO Tina
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Thank you very much Tina!
Oh Nancy, I’m sending big hugs and I do hope the improvement continues – it must be scary. Thank you for telling us about it all. And while I have nothing whatsoever to worry about, I do know what it is like to get ‘flu and after those early months of this year I too rather dread the winter. You keep on keeping on, Nancy and we are with you all the way.
You look amazing as ever! Definitely keep on with the dressing up!!!
Loads of love xxxx
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Thank you very much for your kind words dear Penny!
Oh dear, so sorry about your health.
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Thank you Melody.
Glad to hear you’re doing better. Keeping you in my thoughts!
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Thank you Alexandra!
Dear Nancy, I had read a few years ago about your lung issues! You are so brave and strong and I have nothing but admiration for you as I’ve had a few bouts of pneumonia in recent years and being short of breath is just so challenging and awful. Your down to earth manner, directness and good humour is an inspiration to me and I send you all the very best!
Donna 🧚♀️❤️🐝
That doesn’t sound good, but I’m glad you’re feeling better. I wish you a speedy recovery and all the best!
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Thank you very much Mira, that is very kind of you.
I’m glad your health has improved and I hope that will continue. I think a lot of people were suddenly hit hard after not having the usual contact with flu and cold germs during Covid – our immune systems had a shock! Of course, that’s much more serious for people with serious illnesses so I can understand why you’re worried about winter. I think you’re incredible for being so positive and not letting the illness stop you from enjoying life.
Emma xxx
http://www.style-splash.com
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Thank you very much Emma!
The hardest part of having a degenerative disease is accepting that you will never get better than you currently are. It’s always something you have to think about and there is a lot of mental adjustments that you have to make. I’m watching my mom deal with her Post Polio Syndrome – she is upbeat, but it isn’t ever getting better which is hard on your mental health. I’m glad you got some help there, Nancy, and sending you big hugs, my dear friend.
Thank you for the link-party!
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That is true. And also addepting when it’s gone worse is very hard. But sweet words do help! Thank you very much!
I did know about your lung disease but I didn’t know just how impactful it is. I just want to send you all the love and support I can. Not being healthy can be a very lonely time.
Just re-read this old post – keep on keeping on Nancy. I do admire your attitude to life and the way you are handling this lung disease. Sending big hugs xxx
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Thank you very much Penny, that means the world to me!