A New Year’s Day message from a ‘Silent Spoonie’

 

I’m a butyoudontlooksick.com “regular.” By that I mean I read all the posts, follow on facebook and stay updated via Twitter.  However, I have never commented or responded to all the wonderful words or stories from the digital support group Christine has created.  That is, until now.  See, I consider myself a “Silent Spoonie.”   I have a job that requires visibility, authority, the ability to be objective and most importantly respect.  So, to avoid any issues, I keep my illness to myself for the most part with the exception of a few close trusted co-workers.  As it would be hard to for them not to notice the mood swings, ongoing doctor appointments and the leave of absences. 

So why break my silence now?  Well, 2010 has been a hell of a year.   And I found myself turning to butyoudontlooksick.com for encouraging words more this year than any other combined (for the record my Lupus 10 year anti-versary is this coming July).   And I want to share my year with all of you, in the hopes that I will give even maybe one person the hope, inspiration,  unexpected laughs and just feeling understood that so many of you have given me.

I spent New Year’s 2009 awaiting the outcome of a major surgery my father was undergoing for his vascular disease.  He was admitted on December 30th (my birthday) for what they thought was a hernia, but came to find there was a serious complication with a prior bypass surgery.  He underwent  7 hours of surgery to which we were told “we almost lost him on the table.”  Shortly thereafter, as part of all the tests in the hospital, the doctors found spots on my father’s lung.  He was diagnosed with Lung Cancer.  (Fifty years of smoking 3 packs a day non filter could do this to you). 

So, I spent the first few months of 2010 helping my Mom taking my Dad to radiation, sitting with him for hours during his chemo treatments – as unfortunately his vascular disease would preclude him from having the cancer surgically removed.  Of course, as you all know, it was only a matter of time – Lupus caught up with me and I needed to go on a partial leave of absence from work.   As balancing a high pressure job, caring for my 4 year old, planning a wedding and then my Dad was just too much for my body.

Finally in early August, we saw what was a glimmer of sunlight.  My Dad was deemed in remission.  Next check up – 4 months.  (It is only in this forum that I can say that I was secretly jealous and that it is so sick and twisted that I wish someone could put me into remission so quickly).  But, the glimmer didn’t last long, because 4 days later to be exact, my 4 year old was seizing in my living room.  After a weekend of tests, doctor’s visits and anxiety that I have never experienced before – my son was diagnosed with epilepsy.  And so, we spent the next couple of weeks meeting with the doctor to get the right medication to control his epilepsy.  And I spent every minute of every day worrying when the next seizure would be and what he would be doing when it happened.  After a couple of weeks, things started to look like they were getting under control, his seizures were becoming far and few between and I found myself starting to finally relax a little and try to enjoy my upcoming wedding on September 2nd.   However, on August 17th, as I was on my way to meet my fiancé at the county hall to apply for our marriage license I received a phone call.  My father, he told me that my cousin Joseph (my 1 of only 2 first cousins I have), died at the age of 35 from a pulmonary embolism.  He had outpatient surgery on some torn tendons in his legs 3 weeks prior, the  PE was a post surgical complication. 

Finally, after getting past that tragedy, my wedding went off without a hitch, I had a fabulous honeymoon and things were once again starting to look like they were turning around.  However, on the day I was supposed to return to work , my son had about 8 minor seizures within an hour.  The epilepsy was not under control and back to the doctor we go.  We spent the next several weeks trying to get it right, and while we thought things were looking up – we were wrong.  In the end of October he had 2 major seizures when he was with his Dad on a Sunday.  And according to him, it was the worst thing he has ever seen in his life and hopes he is never witness to it again.

I had started to get pressure from work before this, as all the “life events” during the year, coupled with my own illness was becoming visible and understandably so, starting to be more of an inconvenience at the office.  So the day after my son’s major seizures, I went on a leave of absence with a “to be determined” return date.

I spent the month of November having a pity party for myself.  As my Lupus flared, AGAIN, I was in agonizing pain every day and the doctors couldn’t pinpoint what it was causing it.  After 3 MRI’s, a neurologist, pain management doc, neck epidural, several trigger point injections and other pain management assistance I FINALLY just two weeks ago can say I feel like a human being again.  And my son is doing GREAT. I informed my job last week that I’ll be back in the New Year and was looking forward to enjoying this last week feeling good and really being on vacation and getting back to work in the New Year.  I also couldn’t wait to put 2010 behind me and start focusing on all the good things I hoped to come in 2011.

Today, my Grandmother passed away.  She has had Parkinson’s disease as long as I can remember.  And while I’m sad for her loss, I’m happy she is no longer suffering and is in a place where I hope she is happy.  However, my Grandfather, her husband of 63 years is beside himself.  I will be spending my birthday this year at a funeral home and New Years Eve at a funeral and burial. 

Interesting enough, after hearing today’s news, I immediately took to my @bydls twitter feed and found myself smiling at Stephanie’s crazy tweets and inspired by Christine’s devotion to her cause.  Today, the smiles had nothing to do with Lupus, but about the “friends in the box”that have become somewhat of a sanctuary for me.  You see, I’m not a crier, whiner or a complainer.  I am a control freak type A personality and I hate asking for help and it’s rare that I ask for it.  But, what I have realized is that through this really shitty year, bydls.com has allowed me to get the help I need without asking.

So why am I telling you all this?  Because while all of the above sounds sad, horrible, etc. – it is through all of this and Lupus that I have been able to appreciate the things in life that healthy people take for granted.  Ya know – things like – energy.

And I’m reminded that despite the shit that comes along with Lupus, I have a lot to smile about. I am lucky to have been blessed with a child to worry about and if epilepsy is the worst of it – I’ll take it.  I’m lucky to still have parents and be in a position to help them when they needed it the most.  I’m lucky to have found someone crazy enough to marry a divorced, single Mom with Lupus who is very angry at times and unpleasant when she doesn’t feel well and lashes out at him.

But most of all, this year has allowed me realize the power of hope.  The hope that one day I can be “normal” again.  (As much as I love my handicap parking privileges, I would give it up for a cure in a second to be my “pre-lupus” self, because I really miss that girl.) 

This year, on New Years Eve, I will say goodbye to my Grandmother, all the other sad events of 2010 and reflect on all the good things as well.  I will wake up on New Year’s day filled with more hope than ever for 2011. Not only for myself, but for all of you.  Thank you fellow Spoonies for giving me hope when I needed it the most.   And for allowing me to realize – that we are luckier than most.  After all, we have each other.

Personal essay written by Denise Cunningham for ButYouDontLookSick.com

Denise Cunningham is a “real life” friend of Christine Miserandino. They were brought together unfortunately by Lupus, but stay together because of friendship. Denise has been a volunteer for the Lupus Alliance of Long Island/ Queens for many years. We hope she continues to “break her silence” more often and write for us. ♥

©2024butyoudontlooksick.com
  • Elizabeth

    Thank you for sharing your experiences. I also have a very management type job where I have to be on my toes alot of the day and I kept my symptoms to myself also, mainly “because I don’t look sick.” However, my supervisor and upper managment quickly came to realize that there might just be something to this “Lupus” diagnosis when my doctor sent in my “reasonable accomodations” which listed, a special parking permit, so I would not have to walk miles to the building, a special computer screen, ergonimic chair and key board, the abiltiy to work at home at least 2 days a week, and the right to come into work as late as 10am in case it is a bad lupus day. Now I might warn you, as he warned me, my assingments are fewer than they were before, I am not given the “special” work because even though they don’t see it I am sick. Since they can’t see it is it all in my head? Well I am sure they wonder when people look at me. I could right a blog of my own. Ok I am done now.

  • Denise

    Thank you all for your words, stories, inspiration and support. At the end of the day – we all have each other. And while my year has been a challenging one, it has made me a better person. And to that I am grateful.

    Wishing you all nothing but health and happiness in 2011.

    Your Silent Spoonie,
    Denise

  • I am a silent spoonie too – I have had multiple sclerosis for 17 years now. I can relate to your story as well. I have been having my share of trials and troubles for the last 2-3 years.
    Prayers! God bless to all of you here!

  • Brooke

    I know it doesn’t mean alot coming from one stranger thousands of miles away but I just wanted to say that I’m so sorry for your struggles and hope with all my heart that things get better. You’re very brave and I hope you can keep on smiling this whole new year and beyond.
    I need spoonies too. I’m only just beginning to make use of this vast pool of friends who I have something vital in common with.

  • Thank you so much for sharing your year. I am also silent about my illness and definitely lurk more than post. However, I don’t know what I would do without this site and stories like yours. While things around my world are calming down, I will not be sorry to see 2010 go. Prayers to all for a calm and healthy 2011 as well as for energy and positive thoughts to all those that have helped me so much without even knowing it.

  • Buddy

    I also used to keep my illness under wraps, and I miss my former self too. I was even married on September 2nd (in 2001.) I hope you will find that being open about your illnesses helps like it has for me. I have CFS, FMS and OA. God bless you through your struggles and I agree that it takes a harder toll on people like us. I nearly lost it when I had to attend my grandmother’s funeral and play music at that funeral and fix her house to sell in the same month. The same house I was supposed to be willed. Stress is hard, but you will pull through just like I did, I know it. Take care.

    Buddy.

  • ‘Silent Spoonie’ I hope all goes well for you & that you can regain your old self or a version of her. I’ve lived with cerebral palsy since birth & arthritis since I was five. It’s been almost 11 years now so I know what it feels like to miss part of yourself, anyways best of luck!!

  • Hi Denise-I am also a silent reader, not a contributer. Your story reminds me of the thought that I often have had during bad times (dx MS 18 years & undiagnosed chronic pain for 10 years)-That thought is that at times during my own life (& while reading your amazing & eloquent essay) I have suddenly thought “If I submitted this story to a publisher/script writer they would dismiss it as too improbable!” Thanks for sharing your story- I have to admit that the part that touched me most was your comment about “missing that (pre-Lupus) girl”-I still grieve for my happy healthy pre-MS girl!!.Thanks for putting it so well & it reminds me to cherish the healthier times when I get them. I doubt that any of us take these times for granted!!
    Thanks for sharing & sending you lots of wishes for a better 2011
    nene64

  • Denise,

    I am so sorry for your loss and hope that you will be feeling some ease from your pain. I am sorry that you have suffered in silence for all this time. I know how that feels and I too am thankful for our online support in a box. It’s hard enough to make yourself get up and go to work having an invisible illness. But to have such loss and having to be “the strong one” and support your family…just plain SUCKS!

    I hope 2011 is a good year for all of us!

    Please take care and {{{soft hugs}}}

    Bigmamab8s

  • Steph

    Denise, thank you so much for sharing your story. I hope many more “Silent Spoonies” come out of the shadows and share inspirational stories like yours. You are an amazingly strong woman and stand right beside Christine in being someone in “our” community to look up to.

    I had to laugh at the reference to my crazy tweets. If I have ever….even once made you smile or laugh….my job here is done.

    Thank you for your words.

  • Dee

    Thank you Denise for sharing. I’ve been a silent spoonie too. 2010 was rough physically(I have RA, a pseudo ceribri tumor and mitral valve prolapse) & emotionally because no one really understands. I feel very isolated and miss the old me. I am hopeful that God has something awesome in store for me in 2011! Namaste y’all and keep the faith!

  • Julie

    Thank you Denise for sharing your story. I too lurk on this site and rarely post. I hope things get better for you in 2011. Like you, I would give up just about anything to be like I was 3 years ago. I have fibro, osteoarthritis, lumbar disc degeneration, diabetic nerve pain and when all of these hit at once it is horrible. Thank you also to the others who have commented. I bless Christine for creating this space for us, and I am truly thankful for my “friends in a box”.

  • jill jones

    Thanks Denise for an inspirational story..I too have had 2 and a half bad years..I have had Fibro since 1995 and now have Osteoarthritis which a combination of the two is painful..my mother fell at age 88 in April 08 and broke her wrist and came to stay with me..we then realized her dementia and that she could no longer live alone..I worked full time for a police dept…in Jan008 I began having major foot pain..was treated for plantar facaiitis but pain continued and in Aug 08 had surgery for nerve damage..worst mistake of my life..it has taken me 2 years to recover..December 08 my 63 yo sister is dx with dementia..boom! Aug 09 my workplace becomes terrible..harassed and repeatedly joked about for being out either my foot or my mother..I filed an EEOC which I am still waiting..I resigned Nov 09 to take care of my mother..now I have IC and vulva something which is chronic pain of my bladder and my outside female genitalial..if I thought Fibro was tough, these two things are driving me nuts..I am taking bladder treatments at this time but still have many bad days..my spouse has been very understanding because I literally feel like dying when I have sex so just imagine how tense it gets here sometimes..I go tomorrow for pre op for a precancerous lesion just inside my vaginal area..I feel like someone is just beating me over the head repeatedly..if the IC went away I would gratefully accept the fibro and OA believe me..it was a cakewalk compared to this..but so many people do not understand my pain and somedays I just don’t want to be bothered..my mother is getting much worse and my pain is getting worse as I have to do more and more for her..it is wonderful to have this to share my pain with..hoping 2011 is much better for all of us..

  • Lynne Bruner

    I appreciate it when anyone shares from the heart…Thanks!

  • Jessica S

    Happy New Year, and I hope that 2011 will bring us all some peace and good humor…

    I have always wanted to be an influential businessperson… and I was well on my way until Fibromyalgia swept me off my feet. I was lucky enough to have a mild case of fibro since contracting mono in 1999, but in 2005, I flared up and it’s only gotten worse since.

    Thank you for your story, and congrats on being able to go back to work! I honestly have hope that I will be in decent health again; enough to pursue my professional dreams. It’ll never be too late to be successful… I just hope to find the right place and people when I’m ready! Cheers!

  • Tammy

    I am so inspired to know that it seems that I keep things the same way that Denise does. I am starting a new job this 2011 and only a few trusted know of what it’s like to be me. I also have a crazy man in my life that in spite of my illness, is taking on 2 of my 3 boys and also sucking it up as I had to move from Staten Island, NY to Erie , Pa. It’s a bittersweet time. But we are hopeful that I can hold this job down. I’ve been out of work since September because I couldn’t be on my feet. This is an office setting that I am hopeful I can do. I’m not ready to be out of work. Too young. I also miss the pre-lupus girl Denise. I have met so many that do. I have a best friend with MS that has had similar to you also, a single mother, that misses her pre-MS life. So your story shows us that its not what we don’t have in life, but what we do. All the small blessings that are there to keep us going. All the loved ones that stand beside us and encourage us to keep going. The love of our children and grandchildren that show us unconditionally, we are not sick to them, we are still what they need in spite of our sickness. When I see people who aren’t sick complain about their life and cry and whine, I just want to shake them and say aren’t you even happy you woke up today? Aren’t you glad that you aren’t sick. That your children are well and that you have what god feels you need in your life? Every Lupie that I have met, silent are out spoken, has been a driving inspiration to me. And I am so thankful for bydls.com. Because all the stories and inspirational videos and the especially the Spoon Theory, have really shown me that strength is from whats within and what surrounds us by the people who love us and our faith to believe.

  • Kristen

    Denise,

    Thanks for your story – I hope that 2001 brings you only good things, and good health for your loved ones too!

    I too was a silent spoonie for quite a long time, trying to deal with work, family, health, while my fibro was getting worse and worse. I finally had to stop working, and have started working on an online business where I can control my hours, work when I can, still bring in some income, and get to all of the doctor and therapy visits I need. Running my own business is not something I would have seen myself doing, and it’s incredibly stressful as we get it running, but the commuting and corporate world just didn’t fit me anymore! Hard to be 33 years old and look perfectly fine and deal with people who didn’t understand!

    But I do really miss the world! It’s nice to have all of this support online, but I still find myself alone at home a lot of the time and friends and family really don’t understand as much as my online friends do. This space as well as my other online groups certainly have gotten me through a lot of stress and pain this year!

    You had one line in your essay that really hit me:
    “As much as I love my handicap parking privileges, I would give it up for a cure in a second to be my “pre-lupus” self, because I really miss that girl.”

    I second that, with tears in my eyes. I really miss my girl too! Here’s hoping that 2011 brings only good things and brings us closer to cures for all of these horrible diseases, or at least better ways to deal with them!

    Best wishes to you and your family!

    Kristen

  • Kim

    Thanks for sharing- You have had one heck of a year for anyone to handle let alone someone with a chronic illness. May 2011 prove to be an abuntance of blessings for you. I too am a silent spoonie and forget sometimes that I am not alone- thanks for sharing.
    Kim

  • Lilli

    Wow – you have had some year…. I can tell you, I had the same type of year…. I mean, literally the exact same type… Everytime things would settle down, a day would go by, and then BAM! Something new and exciting to take its place… And this is the year I was finally dx with Lupus (on top of Type 1 diabetes and Celiac disease). I too Denise am looking forward to a healthy, happy and prosperous 2011 and I wish you, and all our “spoonies” the same!

    Prayers for you and your family
    Lilli

  • Cheryl

    Another silent spoonie here dealing with a newborn as a mature mom and not quiet willing to leave the life I lead before her arrival, not loving the constant demands of mommy-hood but loving her like none other which makes it all worth it. I’ve found much anger and angst creep into my life since this huge life change. Had “gestational” diabetes (I’d never been screened) and have just done the post-partum test and failed. Drs appt this week to have them look at me and feeling dread and apprehension because it’s usually me being lectured about weight, depression etc.. instead of the support to really get to the heart of the matter. I’m hypo thyroid and deal with inflammation in my joints after a few days of light exercise and know that there’s more wrong, they just won’t listen. My silver lining is that possibly this diagnosis, the absence of a flight or fight adrenal response, 5 failed inductions attempts and now the glucose intolerance might.. just might.. mean they’ll finally refer me to an endocrinologist and actually take time.

    We are definitely strong and although we don’t have the choice to be as healthy as your average joe, we have more, the wisdom and strength to make the choice to live the life we’ve been given and make the most of every moment.

    What a year you’ve had! I commend you for sharing your story and admire your strength. It puts more of a wind under my sails to let my anger go. Love and light to all.

  • Lara

    thanks for outing yourself Denise, as a silent spoonie/lurker I too get tremendous support from knowing that the connections are there if I need them.

    That I am not alone as Michelle said, “tredging on” day in and day out no matter what this illness dishes out and what curves life throws us.

    Hope, Healthy, Happiness to you and your son and your parents and your new hubby.

    Stay above boards and keep us up to date.
    prayers for a great 2011
    take care
    la

  • heather morgan

    Your story was inspirational to me. After a year of recovering from a sarc flare, I am ready to get back to work and friends. Hope that 2011 is happiness and health for you and lots of boring, boring days, ok?

  • Michelle Hooper

    Silent Spoonie…gotta love that…I am just 1 of the masses that understand that feeling…or that way of life. We have no choice but to keep tredging on…always putting our stuff on the back burner to everyone elses needs…through our bad days, painful days, sad days…all the while silenting begging for help…Then we come to bydls….and we find a peace that overcomes us and brings us back to OURSELVES…with no guilt for it! That’s how it is for me anyway. I was diagnosed 11+ yrs ago and I have never been the ‘support group’ type. I have always just been the extreme independent…to a fault. But then a year or so ago I started getting involved online with bydls, fibro tv, NFA, fibro duck…and all the other wonderfully supportive groups of hundreds…probably thousands of people (mostly women) that are like me…my own kind!!! Not that my family isn’t supportive, and yes they are getting better but…these gals really know me, understand me, get me, care about me…UNCONDITIONALLY!!! Wow…unconditionally!! Now there’s a word for us! My Dad understands and cares, but there is always this hint of disappointment, shame that he projects to me when I have to cancel at the last minute. Or when I am late…again! Or when I am there but I’m not really there…there is always a underlined ‘silent’ condition in play…BUT, not with my fibro family. My complete strangers that are my fibro family. And for that I am ever so greatful. I am so lucky to have all of you…we are all so lucky to have each other.
    Denise, great article. Hang in there…You have all of us silently holding you up…and don’t forget to be kind to yourself. You are just as important as all of those you care for. I hope you have the best year ever!!!
    ~Michelle

  • Dottie Balin

    Denise, thank you so much for sharing your story with us. You are truly a brave and strong soul. Please continue to have hope and strength throughout 2011. Hope it is a banner year for everyone. My prayers are with you. I admire you for writing your story. Soft Hugs 🙂

  • Alice

    Thanks for sharing your story! It always helps me to put things into perspective and to realize that things aren’t always as bad as I think. I hope that 2011 is a much better year for you and your family!

  • Beth Worley

    Denise, thank you for sharing your story with us. Here’s to a wonderful 2011 with your new husband, and that things only get better for you. I know your Grandfather is missing your Grandmother now, but he may surprise you and bounce back from this some. My Great Grandpa had Parkinson’s, and it is what took him from us, and while my Great Grandma missed him greatly, she lived a wonderful life for many years after he left us. And hopefully they will be able to find a medicine that helps control your sons seizures; my brother had grand mal seizures as a child, so I know how terrifying that can be. There is only three and a half hours difference between us, so the times we were alone and he would have one would really scare me, but taught me a lot. It took us years to find the right medicine for him, and them eventually he was able to stop taking medicine all together and now lives a totally normal life, so don’t give up hope of normalcy for your son, it can happen! Keep thinking positive, and know that we are all pulling for this year to be a better one for you than last year was. *soft hugs*

  • Dana

    Thank you for your reply Denise!! You are not alone…I too have had a miserable couple of years..Long story short I’ve been married-divorce from a abusive man, married-widowed only after being together 1 year married for 3 months, he had 3 aneurysms. Lost my Dad in 91 Sept 4th to colon cancer, lost my Mom Sept 6th 2009 to colon cancer!! So I “Celebrate” them only days apart!. Have had 3 shoulder surgeries on my R from Jan 08 to Nov 09. Off of work a tremendous amount of time and a year of restrictions…only to start showing signs of RA in Jan of 2010. It’s been a long year….Fighting my way thru the pain working as if nothing was wrong as I was already on thin ice with my work. I feared loosing my job if I said anything or took time off. Finally the pain was just too bad and so I went to my rheumy and well we tried tons of meds but I haven’t been able to work since Oct 15 of 2010!! He believes that my RA was stress triggered..and my job that is very physically demanding.
    We have to take time for ourselves and I come to these boards for support, ears, and understanding… Big hugs to you and prayers for your family!!

  • Pam

    Silent Spoonie…..I like that. It probably describes a lot of us. Thank you so much for sharing with BYDLS followers. I too depend on this site and stories like yours for so much support. Thank you again and may God bless 2011 in the best way for you and your family! ♥

  • Dale

    Thank you for sharing. Your essay so beautifully written also. Lots of love, gentle hugs, and sunshine being sent your way! You are such an inspiration in your positive views and thinking. I absolutely love that and I try myself to live this way. I have fibro but am thankful for so many wonderful things I have in my life. I feel the fibro has lifted me up to be a better person, more caring, more gentler and much more spiritual. All good things. Life ain’t perfect we best make the most of what we are given and be thankful at that!
    Lovely essay Denise, share with us again and again!
    Sweet blessings to you.
    dale

  • torie

    Sending you hugs and thank yous all the way from Wales, UK! x

  • Jennifer

    Thank you for sharing your experience. I understand the hesitation to do so but in the end, know that it helps so many when we do. I am sending white healing energy your way, for you, your son, and your grandfather. 2011 will be better than 2010. It has to be. For all of us. Namasté.

  • Kimbopaloopa

    Denise Thank you for sharing your story of strength and hope! Thank you for choosing to inspire! Praying and hoping that you will be healed…..that you will continue to have your awesome perspective….that you will be aware that you are loved and cherished every day by those you love and beyond…..

  • JewelsVN

    Wow now that is; “Putting it all out there”! Thank you so much for taking time to share your world with us. So many things you have went through I have as well. You showed us the ugly side of life and wrapped it all in a package of understanding, courage and hope!
    BYDLS is a God send, I had no idea this site even existed if not for a fellow Spoonie sharing the info with me on FB before I even knew what a “Spoonie” was. I didn’t know there were others like Mary who even existed, just waiting to lend a hand, ear, and Spoons to help with ANYTHING.
    After all of that you have had to endure still you came through it and gave to others. What an inspiration!
    May 2011 be gentler to you, and thank you again for helping to empower us to look for the good and never give up!
    Blessings,
    Julie

  • I am with Shawna and want to thank Denise for sharing her story. This part year has been hell for you and I sincerely hope that you have all the Spoons you need plus One in the new year and that you have a smooth ride in all your life, but you still can appreciate that nice little things. This appreciation is a really strong trend of the Spoonie group. There is always someone writing or commenting about something good that comes out from the hell we are in. I want to thank every one of the Spoonies that write articles, whom comment on the website or on FB. You don’t know how uplifting you all are, as a group and individually. You have helped me once and again, each time I needed to see the light in my situation. Thank you, thank you, thank you.
    Happy new year and gentle hugs to every Spoonie and to every Spoonie’s friend!

  • Stacey

    Thank you for your story Denise. I too am a silent spoonie. It is really wonderful to know there are people out there who understand us when our family and co-workers can’t. I hope your 2011 is great one!

  • Shawna

    Thanks for sharing your story. I too have been a silent lurker garnering strength from my “spoonies in a box”. I am very fortunate to have a “mild” case (whatever that is) of fibromyalgia and to still be working and hanging in there with life and family. I just spent 3 days in flare recovering from the holidays and have poured over all the articles and comments I have missed – while my believing-but-not-comprehending husband took care of the house, the pets, the cooking and cleaning and our daughter while I felt lazy, useless, out of control and self pitying. I want to thank everyone for their time in writing these articles and sharing of themselves in comments – it was just the support and uplift I needed to get me through these days. And I appreciate the color plate graphic as I am also “color vision challenged” but that is a whole different post ;-). Gentle hugs to all!