Every now and then I decide to post about my personal life instead of just posting scrapbook inspiration. Today I am about to do that - so be warned... I'll try to make it funny as to not bore you, but on this topic, that may be a reach.
It's been one year since my brain surgery to remove my unwanted visitor that I named Hugh (huge unwanted growth in my head). I had a benign brain tumor on my hearing/balance nerve called an Acoustic Neuroma. I discovered this through an MRI about five years ago due to some reoccuring balance/vertigo issues. If the tumor is growing, they need to surgically remove it so it doesn't do further damage. It affects your hearing in that ear, your balance, and can affect your facial nerve since it is usually intertwined on to those three nerves. And in about six months I will have the first MRI since surgery to find out if they got it all or if it has grown back. Let's hope Hugh is gone forever.
I don't want to make this a downer, negative post, but I do want to say that I had NO idea that this surgery would not improve me, but actually alter my life in many negative ways. I always thought of surgery as a way to fix something - to make you better. This surgery actually turned me into what I refer to as a "handicapped" person. It does damage to the existing nerves and structures when it is removed which means you are left worse off then you were when you had the tumor in your head! Come back to me Hugh!!!
I was always a fairly healthy person who worked out and was thin and took good care of myself. There was nothing I couldn't do physically and I didn't deal with any limitations. I never thought all that would be taken away from me. It just didn't occur to me that I might have health issues that would alter my life greatly and affect me not only physically, but emotionally as well.
Over the past few years, I have developed very bad anxiety - especially in social situations. It is all due to balance as I can't balance well in crowds and it makes me nervous which brings on anxiety attacks (I don't do well in crowded places such as the grocery store, movie theater, etc...). The anxiety causes me to avoid a lot of social situations that I used to love being in. My balance issues got worse after the surgery, so over the past year, my anxiety is much worse than it had been. I can't move quickly having only one balance nerve (they removed the other one in surgery), so I fall a lot and embarrass myself and my family a lot! This has affected my social life quite a bit and I have become somewhat of a recluse (who luckily loves to create, so I am a happy recluse).
I am also dealing with daily pain. I choose the more invasive method of surgery which cut through my neck muscles and many nerves on the back of my head. I picked this surgery method to save my hearing in that ear. Unfortunately I didn't realize I may still have my hearing, but with that comes all kinds of other problems - noises in my head, loud ringing, and muffled sound that is hard to make out. If someone talks in my right ear, I can't make out what they are saying and my ears are VERY sensitive to sound (another reason I'm a bit of a recluse). By cutting through the nerves and neck muscles, the possibility of long term headaches existed. But I am a very positive person and I felt I would somehow not be one of those unlucky ones. I have had head pain every day since surgery and it does not seem to be getting any better after a year. Again, it limits me socially. I also have nerves on the back of my head that are inflamed and cause pain when touched. There are things they can do to numb the nerves (cortizone shots or botox which would really turn me into an OC housewife, right?!?!?!). I haven't tried either yet, but plan to once I get my butt to a pain specialist.
Speaking of my butt, thoughout this five year process of finding out about Hugh and then dealing with the anxiety of removing Hugh and then actually removing Hugh and then recovering from removing Hugh, I have grown quite a bit in the buttox region. I've put on at least 40 pounds (not willing to find out if that number has grown any more so I stay off the scale). This might be the worst part of this whole thing. I HATE HATE HATE seeing people I haven't seen in a long time and see that look in their face of noticing my weight. It embarrasses me so much. I just want to start with a joke to lighten the mood - yes, it's still me, just more of me. I get why they look at me that way - I was thin my whole life and now I look very different. But I still find it incredibly embarrassing. I've tried to diet, but I never feel very well so eating makes me feel better and I can't seem to stop! I cut out sugar for 2013 and that didn't help. I stopped eating my beloved bagels - nope, didn't help either. I exercise less because of my head pain - if I strain at all the pain increases. So I've basically become a couch potato recluse. A chubby one at that. My boobs are so big, I'm surprised OC Housewives hasn't contacted me yet.
If anyone gets diagnosed with this type of tumor and then reads this blog post, they may freak out! I feel bad putting it all out there as I try to stay a very positive person. Heck, I'm alive, right? I can still function somewhat normally. I live in the most beautiful place ever. I have amazing kids and a family I adore. So if you see my Instragram feed or my Project Life pages, you would think I have the perfect life! And I do in many ways, I just never feel good which is my battle to fight. We all have something difficult to deal with and this is what God gave me, so I try to keep a positive attitude and not complain much. I would prefer this over losing a child or having something happen to one of them. I count my blessings daily!
So what do you think? Funny???? Ok, I failed miserably at funny. But I'll end this post with a funny story. We took a four day trip up to Monterey a couple of weeks ago. For the first time in a year, I attempted to ride a bike. I often forget how handicapped I am now and I just try to do things I used to do and then fall or fail. As I was riding about 100 feet behind my family trying super hard not to fall, a bird (or group of birds) shizzled all over me. It landed on both legs and was running down one dripping on the ground. There were multiple colors in this little treat. IT WAS SOOOOO GROSS!!! So imagine me trying so hard to balance as I'm dripping bird shizzle all over the ground. I delt with that, but then on the ride back, I fell into some bushes. At least I didn't get too hurt - more my pride, but also a banged up heel. And then these two guys ride by and shout "blanking tourist"! During moments like that, as my big butt is caught in a thorny bush and I'm covered in bird shizzle, I think to myself... maybe, just maybe God was trying to teach me a lesson. How to be humble. How to handle being completely humiliated. How to realize that I can't be perfect (nor was I ever perfect) and I need to be more compassionate to others. To realize NOT to judge. To understand others' pain. The list goes on, but the (large) bottom line is I am a changed person. In worse ways physically and sometimes emotionally when I get down. But in better ways because my heart is bigger and I care so much more about others. And I feel more of their pain and suffering. And I think over all, this new (bigger) me is a better me. So I'm happy. Generally speaking.
I hope you are all happy too. xoxox - have a great week!!! I'm off to clean the garage while trying not to fall! suzy
Oh I just LOVE you Suzy!!! I never knew you the other way.... and I love you just the way you are off balance and off kilter!!! You are beautiful and talented inside and out and I will walk along side you with bird shizzle any day!!! I will even wear the bird shizzle with you!!! I love you friend!!!
Posted by: MaryAnn P | July 08, 2013 at 11:37 AM
So very brave of you to put all of this out there, I hope it has helped you and that you can find some relief from the daily pain. It's very easy to look at peoples lives and think they have it all or that their life is so much better than your own when must of us are facing daily challenges like yours. I don't "know" you personally but you sound like you have the stuff to get through this. Good luck I will be praying for you.
Posted by: Tracey Hespe | July 08, 2013 at 05:55 PM
Suzy, we don't know each other. I started following you on a friends recommendation because of your brain tumor situation, I had a partial resection 8 years ago. I just really get everything you said, life is so different now. I want you to know that your positive attitude has been an inspiration to me - it's hard sometimes with the headaches and falling in front of people, my memory stinks, etc etc; but seeing you with your similiar situation and being so positive and just out there doing things, I love that. I'm super impressed with you!! Thanks for sharing the hard things as well as the good, and for being such a great inspiration.
Posted by: Kathee Clifford | July 08, 2013 at 10:25 PM
I agree with everything MA said! I've never got to know the "other" Suzy but I really very much like the person that I've met :) xo
Posted by: Pixelsandglue.blogspot.com | July 09, 2013 at 12:44 AM
I've known you both ways and just saw you on Sunday and you looked the same to me...beautiful, smiling, serving, and rushing from one place to the next. You are an amazing creative gifted beautiful caring sharing woman whose family is lucky to have you as their wife, mother, sister, aunt, daughter and cousin. Fortunate are the ones who are given special gifts which help them humbly grow and learn and extend Christ-like charity. You are one of the fortunate ones and we are the lucky ones to know you
Posted by: Joyce Woolf | July 09, 2013 at 09:57 AM
I hope that your MRI comes back with positive results! I'm glad you shared this with everyone and that you are trying to look on the bright side of what some people might let really get them super, super down.
Posted by: Cookscrapcraft.blogspot.com | July 14, 2013 at 02:54 PM
Thanks for sharing this update. I have always admired your style and beautiful creativity. I think you are one of the best designers out there! I am sorry you had to go through any of this. I hope it continues to get better and change for the positive. I can imagine how frustrating this process is. It's great that you have your art and scrapbooking and wonderful family to keep you strong and happy. May those things give you strength. Sending prayers and positivity your way for better health and less pain!
Posted by: D | July 15, 2013 at 11:03 AM
Hi Suzy...
I just happened on to your website today. But I know after reading your post it was not "happened" You described exactly how I feel since I had surgery last November. I too feel like the Lord is trying to teach me. your post inspired me, and also comforted me. Thank your for sharing.... I don't feel so alone now.
Annie in Idaho
Posted by: Annie Poulsen | July 15, 2013 at 03:31 PM
Suzy, I don't know you but I need to tell you about a lady I met at Panera Bread awhile ago. She was sitting enjoying her lunch with a friend and had a beautiful standard poodle laying at her feet. I asked what her dog did for her as she obviously wasn't blind (I was expecting to hear she was epileptic). She said her dog was the reason she was able to go out on her own. She had many issues due to back injuries and surgeries and her dog was there to keep her from falling as she walked and went about her daily life. I don't know if this story can help you in any way but knowing the positive effects of dogs I'm sure your anxiety would be greatly reduced too. I hate to see anyone deal with things like this. I hope your MRI comes back clear and that you continue to recover and get stronger every day.
Posted by: Aznelda | July 15, 2013 at 03:54 PM
Suzy, I've been following you for some time...I particularly like your doodles - they often grace my pc as wallpapers so I can have instant inspiration. As I read this, I thought about how many times in my life I've felt embarrassed by my large behind, by being clumsy (because I am terribly clumsy...something to do with my eyesight not being corrected early enough), by not wanting much to be "out" or to put myself "out there," by how many absolutely mortifying things I've done and said in public over the course of my life and ALL of it WITHOUT brain tumor surgery. And the chronic pain...I won't insult anyone who has it by saying I get it. I don't get it. I don't know how people do life with chronic pain. I admire them for strength I don't think I have in me. I wonder sometimes why people can't just accept that we are all different and beautiful in our way and that life changes us as we travel through it. I wonder sometimes why I worry so much about whether or not I'm embarrassing to myself or others...I'm just trying to live my life, for cryin' out loud. And who are the "they" that get to decide what is and isn't embarrassing, anyway? I mean, once upon a time being large and pasty skinned was desirable because it meant you were wealthy enough to over eat and never had to work outside...Ahhhhh....THOSE were the days! I appreciate your transparency...I wish more people were transparent. I think we would have less "bleeping tourist" comments if we could all just put out there what isn't maybe the best of the best and let it just BE. Your bird poo story brought back a memory of getting doused myself...I was 13. Is there anything harder than being 13? struggling with confidence and looking for my own place in the world and along comes this bird...HAHA! This post was healing for ME...It said to me, "Hey...you are not alone!" so...THANKS!
Posted by: Chksngr.blogspot.com | July 17, 2013 at 09:54 AM
Hugs to you!
Posted by: Barbara McCarthy | July 19, 2013 at 05:00 AM
Thanks for sharing Suzy! You are always such an inspiration and especially in how you have dealt with this and continue to. Much love!
Posted by: beckynovacek | July 19, 2013 at 06:03 AM
I came to your blog to read about Maggie Holmes' line, but read this with more interest instead. "Pain and suffering are always inevitable for a large intelligence and a deep heart..." Fyodor Dostoyevsky. And I think that is the point, as well as "The virtue lies in the struggle, not in the prize". Keep on truckin', lady.
Posted by: D | July 19, 2013 at 06:20 AM
It is so amazing how sometimes online we unintentionally find a post that speaks to our hearts like your post just spoke to mine. Your story and your journey is unique and yet in so many ways so parallell to so many others. On the tumor side, my brother in law had an acoustic neuroma removed about 5 years ago. He did lose hearing in that ear and he did actually go into some type of depression - in his case, he left his wife, my wonderful sister-in-law who loves him dearly, and it was almost 2 years of absolute hell as he was out of control with his actions. Both suffered. Meanwhile, back at the ranch (aka my own house) my mom, who has lived with us 22 years, is enduring her 4th cancer in 6 years - sarcoma - and has had surgery to remove a knee tumor, 2 lung tumors, a spinal tumor, and currently a spot on both lungs. I also have a 15 year old daughter recently diagnosed with Aspergers - her anxiety, panic attacks and desire to be social but inability to make it happen breaks my heart every day. We try so many things but so far it's been one step forward/one step back. Just this morning we went out riding around together and she was crying, not knowing what to do, feeling bored but not feeling able to reach out. As you described that awkward feeling of being different, she feels that way too, and most of the time others do not reach out to her to include her. Part III - I am the "weight gainer" and it sounds like I'm in competition with you to see who will gain the most - the stresses really do make eating sound like the best immediate answer too often to me as well. that said, none of us are alone. Sharing our hardships is as important as sharing our joys. Taking it one day at a time and reminding ourselves we are worthy helps too.
I have "known" your name since seeing your layouts in Creating Keepsakes many years ago. You have brought me alot of happiness over the years as I've enjoyed your creations. To be very honest, sometimes I have also felt jealous as I sometimes do whenever I visit scrapbookers blogs and see their families traveling and the kids partaking in extracurricular activities - because I long for my own child to be able to do these things too. Your post reminded me today that I shouldn't be looking for happiness through comparison. We are all doing what we can.
I am sorry to ramble. I really want you to know that what you feel is shared in thousands of homes, and that opening up to me really did help. In some small way I hope my post was not just a ramble but a comfort to you too.
Posted by: Paula Gentry | July 20, 2013 at 07:55 AM
Hi Suzy! This is probably going to sound bad in the beginning but hopefully you stick with me till the end. I met you a few times WAY back in the day, at Srapbook Oasis. You were usually talking about the latest layout you were trying to get published, or that one of your projects had been accepted or rejected. And my "observation/assumption" about you was that you were kind of snobby and looked down on the rest of us. (In reality I knew nothing about you, and I'm sure this was WAY more about my own issues than about you!) So, fast forward 20 years (and my own additional 40 lbs) and I see your name on someone else's blog, and end up here. I'm so sorry to read this post about everything you've gone through!! What a difficult thing for someone who always seemed like such an active, social person. The last 20 years have not been easy for me either, including a divorce and both my boys having some special needs. But all those things have brought me a similar insight and maturity. Once you've been through these really difficult things, does our dress size really matter? There have been days, or even weeks, when I was proud of myself for showering and getting out of bed! I sometimes think the things I cared about and worried about were so superficial that God decided to provide me with these lessons to teach me what is really important! I would like to officially apologize for judging you when I didn't know you. And from the bottom of my heart I wish you the best in your recovery and treatment options. I'll pray that they are able to find a solution to help you. Take care... Kathy
Posted by: Kathy | August 08, 2013 at 02:37 AM
Hi Suzie, I only once commented on your PL layouts but came back today for some inspiration. I don't want to make this about me, however ...
I am really touched by your post. I turned 50 this year, my son is only 8 and my daughter 13. My mother passed at only 48 and my dad at 58. Not only has my family story brought a perspective on life but people like you and others in my circles that aren't with us anymore. I am sad for you but also inspired. I cannot imagine how it must feel to live in constant pain and not being able to do things you did every day without a problem. I have read on another website about woman and her experience with fibromyalgia (not comparing FM to brain cancer though). This woman said something really insightful: She mentioned the pain and complications of FM but most of all she was mourning her former life. What a valid point, I thought. I had never really thought about that, the depression one can feel not just from the pain and the weight gain but mostly the inability to just live your normal routine, your normal life. I wish you well. I wish I could yell at those inconsiderate bikers, so sad for them to be so ignorant. Best wishes, I hope you your MRI shows no growth and I hope you can work on the pain management. There are lots of options.
Posted by: StillWater | August 25, 2013 at 05:04 PM
I think you are fabulous, and if you were to fall I would pick you up.. I hope one day they will find a pain reliever for you, never be embarrassed about what God has dealt you.. You seem to be in good company of friends and family that accept you as you are. As for the butt thing... It happens to all of us.. Blame it on the children like the rest of us... lol
Posted by: Angie Blom | August 29, 2013 at 03:35 PM
Dear Suzy,
I found your blog via MFT today, and wanted to "meet" the person behind some of the most fantastic stamps I've ever seen. I can hardly wait for the release. As I scrolled through your posts, I came to this one...and I want to say to do the very best you can with what you've got. That's all you can do. I suffer from chronic migraines; 12-18 per month, and trust me when I say they are not for sissies! They affect my vision, my sense of touch, my hearing, and even my attitude. Little helps. And they are so darn restrictive. I miss out on tons of things because I simply cannot eat the things served, watch certain things because weird movement can trigger an episode, the heat will do it, and so on and so on and so on. And unless I'm in the midst of a headache, people don't think that they're anything but a normal headache. HA! Pain and I are old friends. But I've learned to live with pain, and for me it's not what I can't do, it's what I CAN do. And it's all good in the end. God's got me right where He wants me to be, and I am content. I hope that things are improving for you. They might, and while this sounds harsh, they might not. As I told my husband today, I'd rather count my blessings than the troubles in my life. So many more of those! Hang in there. I can see from your blog posts, and from comments, you've got a ton of folks in your corner! And now you've got one more...Big blessings to you.
Bev
Posted by: Bev | August 30, 2013 at 05:29 PM
Suzy,
Thank you for putting yourself out there and sharing. That takes a lot of courage! You have obviously reached many people already by the comments that are in this one post.
WOW- how hard we can be on ourselves! It saddens me and breaks my heart to read how you feel about yourself and how you worry what others think of you. I guarantee you your beautiful family is not humiliated by you or embarassed - they love you!
I would hope you would somehow embrace the person you are...we should all somehow do this. I struggle with weight as well and have not ever liked my body and I trying to make changes but until I reach my goal (whatever that may be) I should embrace the person I am. YOU embrace who you are - a more loving, caring, kind hearted and SUPER CREATIVE woman! I find nothing BUT INSPIRATION from you - I amazed at what you can do with your skills.
Strangers can be mean...if they knew your story they would probably crawl in a hole OR if it was a family member of theirs they would have had a different attitude. We are so quick to judge people - shame on us!
Maybe God is using you to teach others how to be more compassionate, caring and understanding! We can learn a lot from YOU!
Take it one day at a time! Thank you again for sharing!
Posted by: Andrea | October 03, 2013 at 07:45 AM