Am I the only one? When people ask me “how are you doing” or “how are you?” I just don’t know how to answer anymore.
I know that some people just want the “I’m fine, how are you?” response. But I can’t even give that convincingly anymore. (My face doesn’t let me lie even if I wanted to lol). I want to tell them what is really going on. But I know that is too much for most people. I need to find an abbreviated answer.
But for you…you all are either going to stick around and read this…or you’ve already clicked away having figured out that this is not really going to be about a particular craft.
So how AM I doing? It’s pretty rough actually. Well, it feels rough to me. I already feel guilty for saying it is rough when I know so many people have worse problems. But these are tough for me…and this is where I am when I am not creating.
In November, I was diagnosed with Ehler’s Danlos Syndrome. Never heard of it? Neither had I. Basically, it’s a connective tissue disorder that is genetic. I must have got it from one of my parents and my daughter has a 50% chance of inheriting it as well. My type is Hyper mobility (there are some more deadly types). Basically it means that I have a lot of pain that comes from unstable joints. I’m working a lot on what I can do to help it from getting worse. There is no “cure”….only treatments.
I regularly see a Dr for series of Injections to help regrow tissue (a painful, expensive, but thankfully slowly making a difference with my pain, experience). I’ve been working on changing my diet to be anti-inflammatory because that is major trigger for pain for someone with my syndrome.
The diet has been extremely challenging for me itself. I recently completed 4 week detox/cleanse elimination diet that was like hard core Paleo eating. No grains, No dairy, No sugar. No fun. I’ve been Gluten free since August in an attempt to be anti inflammatory, but I will probably need to eliminate more than that permanently.
I’m trying now to SLOWLY add foods back in, but it’s particularly difficult to see if they cause problems because I didn’t gastrointestinal problems before with them. I feel like I’m taking so much on faith and the long term goals of eating this way for my future and health.
It means that I spend days not able to move while I’m recovering from injections. That I’ve already eaten more avocados than I knew I would (it doesn’t help that I’m a SUPER picky eater to begin with). And I’m trying to be a good mom and wife…let alone sew, design, write here, etc.
I’ve recently decided that for my health, I really shouldn’t be quilting my own work anymore. Which means investing in sending my quilts out to be long arm quilted. Don’t get me wrong…I don’t mind that, but it’s not free by any means. lol
In fact, as I write this, my back is in a ton of pain, partially due to trying to quilt something.
I’m a person who likes to be in control. And I’m definitely not in control right now. There are a lot of tears and prayers and doubt about what the future will look like. But I’m being as proactive as I can. Once I get the diet under control, the next plan is to tackle physical therapy/exercise that will strengthen my muscles. That is key because the other connective tissue is so weak, you need strong muscles to hold yourself together. So hey, maybe I’ll be a totally hot 40 year old in a few years! There’s hope for that bikini body yet. 😉
I tell you all this, not for loads of sympathy or attention. I’m just trying to be transparent. My word for this year is “Vulnerable”. And sharing this feels extremely vulnerable. But it’s also a reminder that I myself am vulnerable. Every time I choose a project to work on, I’m making that decision based at least partially on how I feel physically. Every time I blog or don’t blog, it’s based on if I can act like all I do is quilt and sew. But I don’t just do that. I live my life. And right now, even with some answers, I have a lot a questions and doubts and pain.
I hope to look back on this in a year and say “wow! look how far I’ve come from there”.
Right now, I feel I relate most to this:
I'm sorry you have to struggle with this Angela and I hope you find a good course of treatments and diet that work for you and make you feel better!!
Thanks for being open and honest! You will get through this and be stronger on the other side. I am sad you have to experience it and make so many choices. Its hard to not be able to do what you want because of limitations due to your body! Prayers for you and your family as you figure all of this out!
Hi Angela,
I understand. They think that I could have a variant of Ehlers Danlos too, but one that affects the bones. It's also made my aorta a bit floppy so that has to be monitored. I'm lucky not to have any pain though. I've found that Clinical Pilates has helped A LOT! It uses all kinds of equipment while exercising to help balance out your body so that you aren't biased to one side. Plus you get really strong. Be kind to yourself. Look after yourself. Love your blog and your sewing. Xxxx
What tough stuff!! I'm sorry you have to go through this, but sincerely hope with time that management will help you feel better all around. Thanks for sharing…
Just because there are people who may have it worse, doesn't diminish your suffering. I'm sorry you're going through this, and I hope you get the answers you want soon. Hugs.
I wish you well and improvement.
I'm so sorry you are going through this. It is terrible to deal with ails at any age, but at your age, I would expect to have a lot of years where I could take my health for granted.
I'm sorry you have to endure this and I wish you the strength to deal with it.
Thank you so much! I appreciate that.
"I'm having a bad day today, but I am doing everything I can to make it better. I'm hopeful that tomorrow will be a better day. How are you doing?" It's an honest answer. If someone is looking for "Fine" they can still move along to another topic. If they are truly concerned, they can ask if there is anything they can do or what is wrong…your choice to give more info or ask for patience, help with grocery shopping, or whatever the immediate need might be. Give people a chance to ask and to help – you never know when you may meet an angel in disguise! Good luck and try to stay positive.
After years of going to every specialist there is, having to quit my nursing career, and barely being able to move, a rheumatologist finally noticed the signs of EDS (most of them have been there my whole life). Getting an answer was a relief, but it also brought on a whole lot of frustration and uncertainty about what to do now, and guilt over what I couldn't do. I have to say that it has gotten manageable over the last couple of years. Weather changes are hard to deal with for weeks at a time. If I eat the wrong thing then I have severe issues for days. It is overwhelming at first. Hang in there. I dont know that it "gets better" but it definitely becomes manageable. Hugs.
People who genuinely care stop and wait for a truthful answer, those who just want a "fine" don't really matter. So sorry that you are going through this. Sending positive energy and hugs.
Thanks for writing this. It means so much when bloggers and writers don't try to pretend everything is fine all of the time. That's not how life works but it's so scary to put yourself out there. I know the quilty community has your back if you need it, though asking for help is hard in itself. Best of luck!
I wish you peace in your journey. I have three EDS hyper-mobile relatives in my family so I've watched from the sidelines as they've been diagnosed, started into treatment, found additional complicating diagnosis along the way, re-tooled and moved forward again. It's hard and I'm sorry; I wish no one had to go through this. May you have the love, understanding and support of your friends and family. God bless.
So sorry to hear this. Hoping for better days ahead.
Angela, you are BRAVE and STRONG to share something of this nature in a public forum – truly vulnerable. I pray for your healing and strength. I pray for answers – that they may come in due time and patience while you wait. I pray that you truly know it is okay to be broken and that your brokenness makes you a stronger woman, mother, wife, and artist in time.
I'm sorry to hear of the pain, struggle, confusion, and frustration you've been going through. I can't imagine exactly how you're feeling through all of this. Just want to encourage you to keep your trust fixed on the LORD. He may not remove this, but one thing is certain: “And we know that all things work together for good to those who love God, to those who are the called according to His purpose.”
Romans 8:28. I pray that Jesus will heal and comfort you as well as bring clarity, and most of all that He will use your diagnosis in a mighty way. Big hugs.
For what it's worth, I deliberately clicked through here to see how you are. Your sewing is always beautiful but I genuinely wanted to know how you WERE doing. Kudos to you for your honesty and hang in there, if only well wishes made a practical difference. You'd be set! X
For what it's worth, I deliberately clicked through here to see how you are. Your sewing is always beautiful but I genuinely wanted to know how you WERE doing. Kudos to you for your honesty and hang in there, if only well wishes made a practical difference. You'd be set! X
Health issues, especially ones that are chronic, are hard to accept & understand. I hope & pray you're able to find the treatment & diet you need to help you feel as best you can. And that you will have strength, courage, peace & hope.
Angela – so sorry to hear about the difficult health issues you are dealing with. Sending you love and hugs xxoo Charise
I have a child, who is only 7, with a chronic & painful health condition for which there is no cure. It also requires an extremely strict diet, & I (by choice) eat the same diet as my kid so that he doesn't feel as alone. I can 't claim to understand how it feels to walk in your shoes, but as a someone who loves someone with similar struggles, you have my compassion, & hope that you are able to find the light & joy on your path to the healthiest future you can find!
Angela I'm so sorry to hear about your pain. I hope the treatment works and is manageable. I loved all the positive quotes you included and hope those and all the messages of support bring you strength. Gentle hugs xxx
So sorry you are having to deal with this, Angela. I don't know if you know of knitting designer, Heather Zoppetti. She also has EDS and writes about it on her blog. Perhaps she is another creative person you could connect with.
http://hzoppettidesigns.com/blog/blogroll/
I would stink at trying to change my diet, and exercising. Sorry you are going thru this. I'm sure it's not fun in any way. At least, if you learn what to do/not to do, then you will be providing something that could be useful to your daughter, if she develops this. Hopefully getting this out in the open, will be a great first step for you (other than what you have already been doing since last fall). Good luck, and, hopefully things will get easier over time.
Thank you for sharing. Blessings on you to find strength for this trial.
I hadn't heard of this disease either, and I'm sorry that it has fallen onto your shoulders to be the one educating the rest of us. I pray that your treatments will offer you relief from your pain, and support from your friends and family will help in your emotional healing.
Oh no! It is so very frustrating. I don't know if this helps (but I hope it might cheer you a smidge) — what I admire most about your talent is your great design sense and fabulous quilt ideas and, from the sounds of things, this syndrome can't take those from you. My thoughts and hopes are with you as you struggle with this. I wish I could really make this better for you…
I am sorry for your loss of health and having to amend the picture of yourself to include this affliction. It takes a great deal of COURAGE to tell so many people that are essentially strangers but have a common interest in your lovely work and the person behind it. I admire you a great deal and pray that you will find solutions for your health.
Sending you good thoughts, strength and support. When you are most down I hope you remember the people who wrote the 30 comments before me and the others that follow and know that they, too, are cheering for you and wanting only the best for you. Your story is certainly one of a strong woman who is proactive and willing to fight for the best health she can have, and now, with all our support, as well as that of friends and family I hope that you know we have your back…today, tomorrow and whenever you need us!
Thank you so much! I am overwhelmed by the outpouring of support. Knowing that this is not going away is a heavy realization…and it is indeed made lighter with the support of others.
You continue to be in my prayers and I thank you for your opening up here to us. Your perseverance shows through in your words and I am in awe of your strength. I am sorry you have to go through this and will continue sending good thoughts and support. 🙂
I too have something not visible, but painful and partially debilitating. I have been coping the last eleven years. People who know sometimes wonder how I make it through a day, others don't think I do enough. You have to do what you are comfortable with doing and only that. Your condition will limit the way things are done, but in time you will find a like that is as full as your new reality will allow. Good luck on your new journey.
I SO get it. My most hated words are "Moving on with your life". Losing my husband opened up Pandora's Box. I woke up deaf and blind in a foreign country, and now I'm living someone else's life in the company of strangers. We ALL feel it and end up floating around in some great ocean current with no control. Just no nice way to say it.
Oh I'm so sorry. I hope you find your own life raft soon.
I'm so sorry that you're struggling. I appreciate your honesty and courage to say "hey, everything's not alright" because I feel like it's so easy to get into a habit of just hiding anything that's not curation worthy. We all have our curated facades, hiding inside, feeling alone, standing next to everyone else feeling alone, too. So thank you for taking off your facade, and holding out your hand, and inviting people in. May we all follow suit.
Sending lots of positive thoughts and love your way!
wow, that's a tough one. I wish you all the best for unlocking all the secrets to keeping the pain at bay.
Aww, I'm sorry. Best of days ahead in health, family and peace.
It sounds like your taking all the right steps. We all suffer in this life but I pray you will stay strong in your faith and that you will find relief. Our modern diet is destroying us all so I know keeping that under control will help. I hope yoga will be recommended. Not only for the outstanding strength it will provide but most importantly for the mental meditation. Please keep us updated – we all care.
Yoga can actually be dangerous for EDSers because we are so naturally flexible. We will be the be the super bendy ones in class. I had a private appointment with a teacher who studied extensively on EDS and was able to make some modifications for me which were similar to the modifications you have to make for pregnant women (whose joints also become very flexible). But it was still tough for me.
Angela, I will place you in my rosary intentions tonight. I am so very sorry to hear about your diagnosis.
Your post jogged my memory about another blogger that I've following for years who is dealing with a similarly serious condition and whose best friend (also a blogger, but not about her condition) has – I believe – the same condition as you. Anyway, I thought you might want to try connecting with them. Jessica of Very Mom is amazing and awesome in a thousand ways and her best friend, Tracy, who shares your condition seems pretty amazing too. Maybe start with this blog post from Jessica's blog: http://verymom.com/2014/12/31/caring-cared/ then try contacting them from there? Hugs to you.
So sorry to hear of your struggle I too have a chronic pain disorder and trust God moment by moment. I love your quotes…I spent this afternoon with a very dear friend and previous pastor. Ed talked about how messy life is even when we trust God because really we have no promises that our lives will be easy or pleasing to us. One step in front of the other with Gods hands holding ours.
I'm so sorry to hear this angela. Thank you for being honest and opening up to us. A lot of people have their struggles, though this doesn't negate anyone else's, if we all stiod up and were honest people whobwere suffering would perhaps not feel so alone. I'm not being very eloquent here, i'm trying to say that it must be very tough for you but being open about it allows other people to care about you and to share their ills and get some support too
I also have EDS Type 3. All I can say is that you seem to be on the right path doing the right things. You learn what works and what doesn't over time. Saying I'm not feeling so great today but tomorrow I hope I will be is OK. There is a great essay called Spoon Theory that helps explain when people say "but you don't look sick" LINK http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ BIG HUGS for you.
Thank you Annie! Glad to have the advice of a fellow EDS3 victim. I will definitely check out that link!!
Thank you so much for this link. People who don’t have a chronic illness don’t get it. This is a wonderful way of describing all of the choices that need to be made during the day. I’ve saved the PDF.
Oh goodness Angela, that's a lot to get your head round, especially when you are having to experience exclusion diet too. Love to you xxx
Thank you sweet Kerry! It is certainly giving my patience and tolerance for a spin. Trying to work my way through the mourning period of learning you have an incurable syndrome.
Oh Angela I know you're not asking for sympathy by sharing your journey but I want to send you a big hug, not to tight. I hippie things get better for you in the long run and I'm very sorry to hear you're struggling so much. Thinking of you and keeping you in my prayers.
I am so sorry to hear you are struggling with such a disease. I understand how it feels. I just spent the last year dealing with breast cancer, and while I am "better" now, that monster is always lurking. I continue to have residual issues after treatment, but my husband reminds me of how far I have come in a year. I hope you have family to support you as I do, and that next year you can look back and see progress for yourself. Hang on tight, and be good to yourself. We love you.
Thank you for bravely sharing with us, your readers. Just as your wonderful patterns and creativity have encouraged us so does your battle. Blessings and prayers.
Thank you for your prayers! I will take every last one I can get!
I'm so sorry to hear you are in such pain. Sending you prayers for healing.
Really sorry to hear that you are struggling. My teenage daughter is currently going through assessment for EDS so I can really understand the inner turmoil. I hope you soon feel more at peace with yourself and your diagnosis. Thinking of you xx
It's never easy to share the real life stuff but you are being very brave. Hold on to your family for support and be easy on yourself. You are an inspiration to all of us and not just for your quilting. I will put you in my prayers.
So sorry to hear of your struggles. You are an inspiration to many of us but you need to take care of yourself most importantly. You will be in my prayers for healing.
Angela, I am so sorry for what you're going through. You are being proactive with diet and exercise and your quilting. It will get better because of that. I must say it's a beautifully written post–your words, the quotes, everything. You're an inspiration.<3