Wednesday, May 26, 2010

Aplastic Anema turns to PNH

And I'm pissed. Mike has come out of remission and his diagnosis has changed to pnh.  I'm so mad it has turned irrational. I take it out on the trash can that won't wheel into the drive way pad or the kitchen cabinet that won't open unless I yank it forcefully and slam it closed over and over and over until I find myself sitting on the floor, crying with sore knuckles and a busted up cabinet door.

He JUST got better. It hasn't even been 6 months since the last flare up.

I need more time. I'm trying to build a business so I can take care of him and the kids. I went from pizza delivery girl to stay at home mom to selling crafts as a hobby. I'm nobody. I'm nothing.  I do not feel capable. I am not business savvy. I'm just trying to earn enough money so he can spend time with me and the kids.

I'm supposed to have faith but it isn't there and that makes me feel an outsider to the people of faith. All I can think it that I need to prepare. Prepare for life with him sick and life without him. But how do you do that? You can't and it isn't rational thinking. Logically I know this. Logically I can think through this and work harder and believe harder and maybe there is some magical diet that will make him healthy and energized with whole bone marrow.

I wasn't sure if I should post this. It is intensely personal and it shows me at my most vulnerable. But the kindness and support you all have shown me has been something I have grown to depend on. Normally I withdraw. I hole up in my mind until a solution presents itself or time heals hurt. But this is effecting my thoughts and my work in an unpredictable manner.

* I just wanted to say thank you for all your emails, comments and prayers. Today, I got up, I pulled my hair back, rolled my sleeves up and got to work. Because of your love and care, I do not feel alone. I am overwhelmed by your support. I will keep you updated on Mike and he says thank you also. It is amazing how much strength you can gain just by words shared. Thank you so much.

41 comments:

  1. I wish my words could help you cope. Or feel better. Just know that we are all hear for you, to talk to, our shoulders are bare for you to cry on.... and we will listen and comfort you the best way that we can! I know you are strong and I know you can get through this, you can be strong for your kids, and for your husband. I know you can do it. Love you Shan. Hang in there.

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  2. You are NOT nothing. Loving wife, mother and ARTIST. Do not judge yourself so harsh.
    All of our positive thoughts are coming your way!

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  3. My heart broke when I read this. I don't have any "words of wisdom" to share with you, but please know that you ARE somebody and you ARE something. I can't imagine how it feels to be going through what you are right now, but I will keep you and your family in my thoughts and prayers. God bless.

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  4. All I can offer you is an ear and shoulder. I really don't know you and yet the tears are rolling down my cheeks right now. I can tell you that I so understand every word you have writen and I personally know every emotion you are going through. My husband was diagnosed with Primary Pulmonary Hypertension at the age of 44. I found that a good cry was always good to release some of those emotions. Writing about them also helps and knowing that there are people out there that think about you and care is huge. I will keep you and your family in my prayers.

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  5. Shannon, I am so sorry to hear this about your husband. Life can be downright shitty ... there's no other explanation. But I have to correct some things in your post. First of all, you're not nobody ... you're a talented jewelry designer ... an extremely talented one at that. I think your beading community will surround you with their love ... if not their financial support of your business. Hang in there and let the Universe or God or whoever you believe in have a chance to help you! My prayers are with you and your family. You are a very brave young woman. You can do this!

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  6. Oh Shannon...I am so sorry! As a nurse I have given supportive care to many patients with PNH. I am sorry that this is happening to you and your family! Just remember that I am close by and if you need ANYTHING I am here! You and your family will be in my thoughts and prayers! Take care!

    Warmly,
    Leslie

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  7. Oh my goodness Shannon. I am so sorry to hear about what is happening to your husband. Know that all of us are here for you and that thoughts of support are being sent your way. I have no frame of reference for what you are now going through, but want you to know I am thinking about you and your family!
    There is a huge community out here that cares about you! You are strong. You can conduct your business and take care of your family. Have faith in yourself (though I know it is hard!). You will get through this.
    Beth

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  8. Sharing that must have been really hard. But there is a catharsis in sharing something so deep and raw. I was utterly speechless when I read this. It shook me to my core, Shannon. I have a faith that is pretty strong and I do believe in the power of our collective spirits all raising our prayers to whatever we belieive in. I am raising my prayers for you. For peace. For Mike. For strength. And for your kids. For time.

    Know that I am thinking of you.

    "Every day may not be good, but there is something good in every day." I hope you will be able to see through the dark clouds and find a "something good" in every day. That is why I invite you to "Enjoy the day" every time I comment.

    I hope you can.

    Erin

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  9. Shannon....I am SO SO sorry to hear this. I had no idea. It seems like it's always the good people of the world that have some of the worst experiences. I grew up in a family with a sick father and my mother worked to support us. I was 5 when he had a massive heart attack. Although, it didn't play out like "Love Story," I hold my mother in VERY high regard today. She worked incredibly hard to supplement the social security disability pay for him. She passed away 24 years ago and I know that I am the person that I am today because of her strength. Life is unfair. I'll be thinking of you.
    MaryAnn

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  10. i'm sorry to read your husband is ill..very scary for everyone.
    i think your reactions are very normal..
    you really can't be actually feeling like you are nothing..did i even read that correctly?
    most of us have had uninspiring jobs at one time or another..
    my list is long..how about night shift self serve gas station attendant..i sat in a kiosk thru the night and took credit cards..
    you have a nice business..my suggestion..start writing books..your work is created once then can continue to sell onward into the future.

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  11. I don't have any words, except I am listening and hoping that knowing that I am hearing you and your pain gives you some comfort. Withdrawal is one answer but from my own experience it is not always the healthiest way. I know it sounds trite, but really, if I could I would give you enormous hugs and let you cry on my shoulder until you have no more tears.

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  12. I really don't know what to say - but you are in dire need of some sort of response, I think.
    I am sending you thoughts of strength to get through such a difficult point; thoughts of love to ease your aching heart; thoughts of peace, so you can find a way to go from day to day.

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  13. Shannon, I don't know what Aplastic Anema or PNH is, but I'm going to do the best thing I can do for you and your family, PRAY.

    Please don't keep things inside, it would make you sick and no good for anyone, and that's not what you want. Whether you share on this blog or express your true feelings to your family or friends, you have to get things off your chest. Let others have faith for you when you can't.

    You are not "nobody" or "nothing" and the strength that you will show through this very difficult time will show you the person you truly are.

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  14. Hi Shannon,

    So sorry to hear about the health issues in your family. All I can do is send you hugs, and during this time be good to yourself any feelings you have are OK.
    I hope you live near a university hospital so you can get the best care for your husband with the newest treatments. I have a nursing background so if you have any questions about how to navigate the medical system, contact me via my etsy shop.

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  15. I am so sorry that this has happened to your family. Although you must be feeling a tremendous amount of responsibility make sure to make space for your feelings too. You are so talented. I already respect you for your artistic abilities and creativity and now I can respect you for your courage as well. I wish you faith in yourself and in the love in your family.

    Leeya

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  16. don't hole up... support gives you strength... you are far from nobody - you actually blow my mind... not business savvy? are you kidding? ok, we need to come up with an affirmation that you can repeat into a mirror every time you are in front of one (even the little one in the car that allows you to see the kids in the back seat)...
    the news is devastating... find specialists, talk to support groups, find the social worker...
    i am not worried about you throwing in the towel, you are too tenacious to give up... you may become exhausted, fearful, overwhelmed - but with everyone behind you, who admires you and cares about you, you will persevere... i know this... put it out there shannon, and just keep putting one foot in front of the other...

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  17. You are entitled to a woo is me moment..very entitled. We do not know each other, but what I see is that you are a very capable person and a somebody, because a nothing person can not create the things you do. I have seen your work all around on different sites and in magazines, that is a strong creative women the one I see. You will do what you have to although it may be difficult but YOU can do it. Hugs to you!

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  18. Oh gosh, I just want to sit down and cry with you! I don't know what to say but I want you to know you have support and people who care. You're not alone on the "faith" issue. I find it helpful to find my "faith" in the kindness of others. If I can help by being a sounding board, I'm here. And I'll hope for the best.
    Mary

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  19. I am so sorry. My last bf had heart problems, and I felt much the same way. Counseling helped a lot, and time. I hope you get the support you need during this horrible time, and remember to take care of yourself. You can't help anyone else unless you are ok yourself.

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  20. I'm so sorry to hear that you and your family are having to deal with something so difficult! And how much more difficult to face after having your hopes raised by a short remission. I would be mad too, and scared too, and tempted just like you to steel myself for the worst case scenario, just in case. I don't think that is a lack of faith, but a natural reaction; in fact, I think it can coexist with faith. I think a cabinet and a trash can are fine things to take your anger out on! It has to go somewhere! Better the trash can than inside you. I think you will find a way to hold your hope and your fear in tension. And perhaps if one remission was possible, so will be another. And it seems we live in an age of constant medical developments. I hope you will lean on the people you have in your life; you are right, it does somehow make the load a little lighter, when it is shared. Will be thinking of you.

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  21. Oh Shannon! I wish I was there to give you a hug! I'm not sure what pnh is, but it sounds really really bad. My heart is breaking for you and I will keep you and your family in my thoughts and prayers.

    Because we know each other through our art and this virtual world, I wanted to address one portion of your post in particular - PLEASE, whatever happens, do not doubt yourself as an artist. Your work has had a major impact on many of us as we admire your creations and use them as building blocks in our own pieces. You've been published, have an Etsy shop that is blowing a giant hole in my budget (and I know I'm not the only one) and you are part of the ABS team which is a huge honor and terriffic exposure. Trust in what you've accomplished and believe that it will grow and help see you through what is to come.

    I suffered through an extended illness and major loss with my dad just a year ago so I believe I can identify with some of what you're feeling and facing - if you ever need to talk, vent, rage, scream, cry, laugh hysterically or whatever, PLEASE e-mail me any time!!

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  22. Shannon, it is good to share, we will help you. Anger is normal at times like this, we cannot understand why things happen they way they do. I am praying for you and Mike and the kids. I will pray that you both find strength to deal with this situation, I will pray that prayer will give you the strength you need. I will pray for miracles, they do happen. Be strong.

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  23. Shannon, you need to cry. You need to be angry. I would be angry. It isn't fair. I know.

    You have time. Maybe not as much as you would like but it's still time. And it's time that is yours right now. Time to hold him and love him. Time to be there for him and support him... if not monetarily, emotionally. Sometimes, that's more important.

    I know reading these words might not help you... they might not soothe you or comfort you but know that *I* know you and your family and that happiness will once again be yours.

    I'm not big on praying (speaking as one who also doesn't have much faith but is working on it), but I will be sending you and your family thoughts of love.

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  24. My thoughts and prayers are with you, everything will be OK. There is no place we can go that God (or our understanding of a higher power!) is not there with us. Try Psalm 139.

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  25. I have tried to write you something over and over but what are the right words to say?
    I would be pissed off too, I would be throwing the phone and kicking the trash can.
    I am so sorry.
    I know what you are saying about faith and not wanting to post this. You feel that you need to blog happy but that is not real life. Real life can suck sometimes and for you it sucks right now.
    I will be praying for you and your family. Take the prayers even though you are mad at God right now. It makes us feel as if we are able to do something to help you when we are really helpless.

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  26. I'm so sorry to hear this. I wish for the best for you, your husband and your family. No, I don't think it is too much to share. It shows how vulnerable we can all become so quickly.

    I understand the faith thing. So have faith in yourself that you can do this with the support of your friends and family. And being irrational is just human nature and I think necessary sometimes to holding on. Oh gosh, I really hope this turns out well.

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  27. Oh Shannon! I'm so sorry to hear! Thank you for sharring and words never seem like enough. I'm sitting here with tears in my eyes and sending you out lots of big, tight hugs! Take it one day, one hour, one minute and one second at a time. You will persevere.
    Michelle

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  28. Oh, honey, that is so sad. I wish I could be there to give you a great big hug. I don't know where you live, but if I was your neighbor I would be there holding your hand. I can only hope that things will get better for all of you.
    My love and prayers
    Marie

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  29. I read your blog and love your work. I just wanted to take this opportunity to tell you that it is perfectly okay to be angry. My husband is a cancer survivor and I know the ups and downs you are going through....you are not alone. Also, there is nothing wrong with posting your feelings; it is part of who we are. Please be encouraged that you are not alone, and things will get better. Praying for your family. Hope

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  30. Shannon, I can't imagine what you are going through, but I know it must not be easy. You've got a lot on your plate and that can be overwhelming. It may seem like you don't have faith, but it's there, and it's what's keeping you going. It's what gets you up in the morning, and gets you through the day.

    Please know that you're both in my prayers.

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  31. Dear Shannon,

    I am a new reader to your blog but just wanted to say that my thoughts are absolutely with you - I'm so sorry to hear what you and your family are going through. My partner has recently been diagnosed with MS; not the same experience of course but I can relate in some way to what you are going through. I am not religious but I do believe so much in the power of positive thought, so I am and will be sending mine to you.

    Rebecca x

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  32. Shannon - I think you are very brave to share what is a very personal experience. I can only imagine how scary it must be for you. I totally understand being worried about the future. My ds has a history of behaviourial problems and impulsivity due to ADHD/anxiety and on his worst days, I worry that he won`t get better. Our situations are not comparable but I have found talking to others, particularly other parents with challenging kids, is helpful. Perhaps your family doctor can suggest a support group or maybe there is a virtual group on the web.

    You have touched a lot of people through your work and your blog, including me. Hopefully your virtual community can give a little back to you during this difficult time.

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  33. Shannon, I'm thinking of you and your family, too, during this difficult time. Best wishes, Melissa

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  34. Shannon - I'm just packing up for a show, and I can't write what I should - but know that you have the support of all of your readers/fans. You need to get it out - don't bottle it in!

    ((virtual hugs))

    Jen (jenniferbeads)

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  35. aww this entry made me cry. brought back so many memories.

    the only way you will make it is to lean on those around you when you can and take it one day at a time.

    look for the silver lining, and sometimes it is really HARD.

    I took care of my husband for three years while he was sick. thank God i had/have wonderful family to lean on when needed.

    hugs and don't be so hard on yourself. You are a warm beautiful person. your family is blessed to have you.

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  36. alice from Alice's Beads and BaublesMay 30, 2010 at 10:50 AM

    I am so sad to hear what you are going through. I can offer hope from God- that only He can give at a time like this. I will keep you and your family in my prayers. Miracles really do happen. You also are a hand made gift to all of us. You have great talent to share and that did not just happen. God gave you those talents for a reason. To Bless others. Use your art as a therapy.

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  37. You and your family are in my thoughts and prayers.

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  38. I am so sorry to hear this. I have not commented before (I have bought from your Etsy shop) but I do read your lovely blog and I am very dismayed to hear that you and your family are having such a hard time - it doesn't seem fair at all. I don't know what it would be like to face that diagnosis, but your frustration and anger seem perfectly rational. Please don't think of yourself as nothing. I'm sure it's hard to try and be everything all at once - I will say some prayers for health for your family. Hang in there.

    Sharon

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Thank you for taking the time to read and comment on my blog, it means a lot to me.
Shannon