When people ask “how are you?”

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:

103 thoughts on “When people ask “how are you?””

  1. Thank you for sharing this Angela. It is a big struggle. You are young and you should be carefree and healthy. I am going to pray for you and pray for your family, and your doctors.
    All of us want to be in perfect shape with out a lot of work involved.
    It is always devastating when we have a hopefully simple problem and learn that the recovery is not going to be simple.
    You always do some beautiful work, I adore your creativity.
    At this time, go slow, even it if means laying on the couch and drawing simple ideas for your projects.
    gentle hugs. You are loved

  2. I knew someone in the quilting community with this and I always thought what an awful and cruel disease. I hope you get the help you need and are able to find a balance of living a good life for the disease and a good life. Hugs!

  3. Thank you for sharing your courage, not only to face this disease head on, but to share so that others may be comforted who struggle with their own problems. I pray that you will find solutions and peace as you meet head on the challenges you face. Your quilting friends love you and wish you well.

  4. I honestly feel for you! Dealing with pain is tremendously stressful on its own, and then you've combined that with probably one of the worst 'diets' to get used to when you haven't eaten like that before. I can't imagine how extremely hard that is by itself. It would probably make me angry and not much fun to be around. LOL My first love is cooking and baking (then sewing/quilting) so cutting out all the 'fun/yummy' stuff would be excruciating for me to do whether it is good or not. The pain part though is something I can relate to as I deal with that myself on a daily basis, 24 hrs a day. That really messes with your head a lot and is very hard to ignore when every part of your body is screaming OUCH! Pay attention to me, yet you're trying to ignore it and yes, smile at the same time, like that's possible in any sort of convincing way. It's obvious on my face when I don't realize it at times because on those days where the pain level is really high and I have to go out shopping or something, strangers in a store will ask if I'm ok or if I need a chair. oops. Guess I wasn't hiding the pain as well as I thought I was. SO very frustrating so, not that it helps you at all probably, but remember you are not alone with the fight. I'm sure that I am not the only other person who reads your blog that deals with pain or something else and can let you know you're not alone in the struggles each day.

    I hope you can look back in a year and see how far you've come as well. That would be amazing for you. That year, however will be a very long one I'm sure. So just keep having fun and smiling on the days you have that aren't as bad as others, and if you have to rest and deal with the really bad days, know we are here and understand that too. Good luck!

  5. Thank you for being open about this. I too am sorry you have to go through this. I too have a chronic disease MS. Yes, it's painful and makes it hard to quilt or to do anything for very long. I also completely changed my diet. I know our diseases are not the same. But, I can fully understand where you are coming from. Hugs and prayers.

  6. so sorry you are going thru this, but glad you're figuring out how to deal with it, I was trying to think of what my old neighbors say they take for anti inflammatory stuff, aloe or something like that.

  7. I also have an invisible rare disease, Circulatory Regional Pain Syndrome. It's extremely hard to live with chronic pain, I have been doing it since 1997. Most people can not even begin to understand what you are going through. Keep up,the fight!!!!!

    1. I do believe that the Lord will guide me through this. It's my main strength actually. lol Otherwise I'd be bitter and sunk. Now I'm able to slightly joke about it and sing through my appointments.

  8. I love the response suggested by Kelly. I think most of us came here as strangers to view and be inspired by crafts that someone (you) was so kind to blog about. We become your friend-similar to pen pals. We may never meet but we care for one another. I pray your journey through this is positive-your attitude certainly is. You know it won't be easy but you're embracing it and will fight the good fight. I don't like comparing types of pain because pain is pain and it's personal. There will always be someone with more or less pain but pain hurts regardless. You have at least 65 cyber friends that are concerned. I read each one as I have developed pain all over my body. I crocheted the other night and my thumb developed pain. At first I thought I need to be tested for this but when I read about how you're really flexible and bendy so yoga is not good for you-that's not me. I will have to continue having the doctors search out what ails me. God bless you………..

  9. Thanks for being vulnerable and sharing with us. I'm sorry to hear you are going through this, but I love the positive expressions and quotes you are focusing on. You WILL be STRONGER because of it. Prayers for you and your family.

  10. I am so sorry to hear of your distress and troubles. I was referred to your blog by a reader who apparently reads both our blogs. Mine is http://mamacjt.blogspot.com and I am a medical mystery and also have been having problems since November. At least yours has been diagnosed so your can start some progress into hopefully making it better. I am still a question and you have no idea how many doctors I have seen. I am unable to quilt anymore, so I have switched to knitting socks. (Smaller, less mess, and since I don't have a sewing studio, less stuff laying around.) I am bound now to a walker, so carrying fabric would also be a problem…….Lord knows if I'll ever be able to sew again. I wish you LUCK and BEST WISHES in droves…my heart is with you!!!

  11. Thank you so much for being honest. The healing is in the talking/writing. I believe in that so much that I have made my quilting blog into my therapy blog…OMG…people do still read it. Amazing. I say..depending on the day. I am doing better, thank you for asking. Or, It is a rough day today, thank you for asking. That is it. Keep writing. The blogging has helped me soo much as does the sewing. Even a few years ago when I had a fall and a bad concussion, I was able to sew straight stitches. It was so helpful. Glad you shared the hand you have been dealt!!! Hugs

  12. Sorry to hear that you're dealing with this. The diet thing can be really hard. I started an anti-inflammatory diet 11 months ago on the advice of a naturopath after having some serious and worsening health problems. (No gluten, dairy, corn, soy, sugar, citrus, potato, etc.) It's been hard and it's taken a long time but it's made a huge difference to my health. I can say from experience that the diet thing gets easier with time. Eventually you'll figure out what restaurants are good to eat at and what you can order. There are loads of substitutes available for almost anything you crave. Vegan nut cheese is fantastic and there are some amazing blogs that have recipes for everything from pancakes to butter chicken. I would be happy to send you some favourite resources if you need them. Take care. Hopefully you can find a regime that allows you to manage the worst of your symptoms.

  13. I actually have heard of your diagnosis before. Your response sounds similar to my friend wh also has it. I send you prayers of health as you work toward a way of life that is more comfortable.

  14. Thank you for sharing and take one day at a time. The medical community is confused all of the time when people get better but a lot is your attitude and your will. Keep fighting and look at alternative measures too. Look to God each day.

  15. OH. EDS. My daughter was diagnosed with this about 3 year ago. Knowing actually helps be able to manage the symptoms. . . . and explains a lot. I will be praying for you to be wise with your time and energy. Thanks for sharing about this. And thanks for sharing about quilting.

  16. I can totally relate to the "how are you?" question. I always want to give the loaded answer too 😉 Hang in there and I bet you will see some awesome changes for the good soon! You are so talented and brave to share this with us out here in blog land. It's a good thing to let others in and you will receive much support.

  17. Thank you for sharing your feelings. I believe a burden shared is a lightened burden. I wish that for you. That you can find others to help you carry that burden. That you can rely on your loved ones in times where you cannot holt it together alone. And I pray for you the best scenario, where all plans work and there are no setbacks.Take good care of yourself. And thank you again. Your blog is part of what makes me (and I am sure many others) happy.

  18. I really am sad that you have this diagnosis. I wish we lived closer to help and cheer for each other as we battle our body's weaknesses. I pray and will continue to pray that you will learn how to manage all this frustration and challenges this disorder brings to your life. Please don't ever be afraid to say "it's not a good day" when someone asks. Sending you a big hug.

  19. Angela, Please know that you are in my prayers. I am sorry that you have this diagnosis. Hopefully, there can be some relief from the discomfort soon. Do what you can, when you can. You must take care of yourself. Hugs and good thoughts coming your way.

  20. I'm so sorry that your Ehlers Danlos is so painful to you!! I hope you do well with the physical therapy and diet changes. My daughter was just diagnosed with it too, this last November. It seems to have caused a surgery to heal up wrong (a terrible abscess formed and she had 3 additional surgeries to try and fix it.) I'll put you in my prayers. Yes, life throws us curve-balls, doesn't it? Nothing is as easy as we think it will be. Her doctor said that she had to strengthen her muscles too, to compensate for the weak connective tissue. At least you and she don't have to kind that affects the heart!! Hugs to you!!! H in Healdsburg

  21. I want to thank you for your post. It took courage to share that "thing" in your life that can cause so much misery, especially in light of the community of happy quilty/crafty blog posts that we read each day. Sometimes I feel such jealously over the joy exhibited on other blogs, then I feel ashamed of my jealousy.
    Several months ago a devastating event took away our "ideal" life. I didn't quilt or blog for a long time but finally crept out of my hole and began to quilt again. Quilting has been my salvation, and I've make myself blog about it. I haven't shared any details of the problem we face daily, I just blog as if nothing else is going on. Although ours isn't a physical problem, when I read your post I felt a terrible kinship with you and felt deeply grateful to you for sharing. I will certainly pray for you as you face your obstacles.

    1. Oh Linda,
      I'm so sorry for your own suffering. I think it just goes to show that more of us are suffering in one way or another than not. Some people use their blogs as a way to have a safe, happy place. And I don't blame them for that. But it does create a false sense of reality. Not that we would wish anything ill toward anyone. But in the midst of suffering it can be difficult to be near perpetually happy and chipper people. On the flip side, many people don't want to know about the person…they just want tutorials and pretty pictures. But I've always tried to give some of both. There is no getting around who I am. It is the reason that I create what I do.

  22. Oh Angela. You hid it well. I had never heard of Ehler's Danlos Syndrome, but just looked it up and …holy shit. My heart goes out to you! And I hope and pray you can improve your quality of life with diet and therapy and that it all combines to make a huge difference in how you feel. Because of debilitating health issues, I can relate to a lot of what you wrote about and actually have the wonderful R.M Drake quote on my bathroom mirror. It's a wise decision to send your quilts out for quilting… that part of the process is the most taxing. Whatever you do, always make sure you have a creative outlet… Quilting is one of the very best and it helps mend your spirit. It also helps to have so many wonderful internet friendships like you do. Hang in there. Lots of hugs sent your way!

  23. I'm so sorry to hear that you are suffering with this illness! I hope and pray that you are able to find some treatments that work for you! I always love reading your blog and please know that there are people cheering and rooting for you!

  24. Dear Ms.Angela,
    I have followed you for years, but never "spoken" to you. You have been such an inspiration, as you are now. I have an autoimmune disease….not going there…but i kind of sort of understand in a less serious manner.
    Thank you for sharing. If you don't feel like blogging….ok. Your followers will still be here for you.
    Prayers on the way, as only He can heal.

  25. Sometimes life offers us challenges for mysterious reasons. My immune system is at war with itself, It takes a lot of convincing to view it as a gift instead of a betrayal. I hope that you can find the pieces that are broken, make sense of them, and use them to make you stronger. I know it is easier said than done Angela, but I also think I know your spirit, you're a warrior, shine on. Thank you for your openness and sharing of this, makes me feel sad that you are going through this but also makes me feel less alone. Oh, and in case you didn't know, Sugar is the freaking devil. Love you.xo

  26. Ang, you have been in my heart and prayers since I read this several days back. (somehow my comment then didn't come through.)Suffering is suffering, not matter how it compares with someone else's suffering. Thank you for the details! It helps us know how to support you better, even though it must have been very difficult to write. I was worried about you since reading a post earlier in the year.

  27. Thankful for you and your open honesty about what's "really" going on in your life. That takes guts and you have guts in spades!!! I do pray for you and a couple of other quilt bloggers I've followed for a few years now. I pray each day as I take my daily walk. So many people in need and pain – holding them before the Father is helpful to the pray-er and the prayer-receiver! He love, He sees, He hears and He answers.

  28. thanks for sharing your experience – life is not always a bowl of roses and it's good to hear the reality too. i'm glad you got a diagnosis and you're working on helping yourself get better. i hope you can stick with the diet as hard and un-fun as it is! at least long enough to see if/how it makes a difference. i liked the picture you posted of the stars in the night sky – it's true about the light shining. take care of yourself!!

  29. Thanks so much for your post. I haven't quilted in almost 2 years and am trying to get back into it. I have been having trouble with what they believe is rheumatoid arthritis and I finally have some medicine that is helping with the pain. Sending thoughts and prayers your way!

  30. I just found your site and my heart goes out to you. Over the ears I have been telling myself that there is always someone that is experiencing more hurt and pain than I am. I find it so frustrating to live with phantom pain. Eight years ago I had my predominate arm amputated because of cancer. I have gone through three different types of cancer and feel so blessed that I am still here to smell the roses. But the only thing that you can do for phantom pain is take highly addictive pain medication which is a no-no on my list. So, I keep trying to find the bowl that has the cherries is it so I can stay positive. It’s learning about the “vulneralbility” of others that keep me on the right path. You are such a strong example to me of facing your trials with such a positive attitude. I wish you continued success in conquering this bump in your road.

  31. Breath, God’ promise is -He doesn’t give us more than we can handle. You must be a very strong person so just believe God will help you. I will pray for the healing and blessings for you and your family.

  32. Thank you for sharing. You are currently “Fresh Out of Amazing!” It’s a book that launches today by Stacey Thacker. It’s all about letting God shine through our broken, broken, messy lives. Your post did that. And you are living it. THANK YOU! I’ll be following you now. And praying for you and your family. Hugs. -Carol

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