LOSING YOUR BREASTS. IT IS KIND OF A BIG DEAL.

It is 7:01 on a chilly morning. I am fighting back tears as I write this. I never would have thought that when I finally returned to writing my blog that my first entry would be because one of my best friends in the entire world was about to go through the same thing I did four years ago. I had held onto the hope, the dream if you will, that no woman close to me would ever have to endure what I did. I don’t mean to sound selfish, though. I wish no woman would have to. Anywhere. Ever. 

Apparently every three minutes a woman is diagnosed with breast cancer. And every October we see the pink stuff. The ribbons, the t-shirts, the slogans. On social media we see the friend or family member who has done a breast cancer marathon. Sometimes they run or walk in honor of a loved one who survived or who has been lost to this rampant disease. I have had two such lovely people in my life do this in my honor for which I was very touched. And sometimes they do it, well, just because they want to. I myself participated in such an event many years ago in honor of my Nana. There are those who are in the so-called “fight” against it you see in photographs with beautiful faces absent of eyebrows and hair somehow smiling and wearing pretty hats or turbans. Sometimes nothing on their smooth lovely heads head at all. There are books, blogs, clothing, jewelry & everything in between. A disease that in my Nana’s time many years ago that was almost hushed or taboo is now the world wide focus of a health crisis. Run for the cure. Fight for the cure. Save the tatas. But more about the term “fight” when it comes to cancer another time. 

Yes, we have early detection now. And access to having that detection has finally become more available than it used to be. Celebrities who test positive for the BRCA gene go straight into having a mastectomy. They make it look so easy, don’t they? You see them captured in a photo sipping a latte on the streets just a few weeks later, holding their kids hand with some caption like “So-and-so with their son (insert trendy name here) just two weeks shy of their double mastectomy.” Its better to be alive. Its better to just say goodbye to the offending diseased part of our bodies. There is even that famous t-shirt that says “Yes they are fake. The real ones tried to kill me.” And after many years health insurance companies were finally forced to not only perform this surgery but also cover a percentage of the cost of reconstruction for breast implants with plastic surgery if a woman chose to have it done. The medical community was slow, as they so often are, to come around to realizing a woman’s emotional health and self image was just as important as removing the cancer for that special part of her body. If the cancer has metastasized it is often not a death sentence any longer. There have been great strides in “treatment”. But that is not what I want to convey in this blog. That is not what I want to talk about at all. I just want to set the record straight first that I get how far we have come. How much better it is. How lucky I am. I get that. Stay with me…

What I really want to tell you is something very real, raw and honest. BREAST. CANCER. SUCKS. It sucks on a level unprecedented. It is scary. It is painful. It is expensive even with insurance. It is draining. When you get the news your brain goes into overdrive. You think of nothing else. Its like having a sharp pin stuck in the side of your head you have to live with while the rest of the world continues to spin around you. While the people in your life sometimes freak out leaving you feeling helpless and lost. While you try to concentrate on making quick, important decisions. Absorb mass amounts of information. Attend what feels like hundreds of doctors appointments, lab tests and screenings. While you try to “take it well” because you have to go into take-care-of-business mode often misleading those around you to think you are “doing just fine”. All the while knowing “I am losing my breasts”. Because cancer does not care. Cancer does not care if you have family that needs you. Cancer does not care that you are in the middle of a project or have an important job. Cancer does not care you don’t have the extra money to cover what is not covered. Cancer couldn't care less if it is Christmas. Cancer is an asshole. And when you are a woman and cancer claims your breasts in any way, shape or form the bottom line is it just really, really sucks. 

Please don’t be misled, either. Mastectomy with reconstruction is not a “boob job”. And while sure it may give some woman the opportunity to have the shape and size breasts she always wanted it is completely different. Your natural breast tissue is completely gutted away from your chest and shelled out of your breast skin which is very painful. You lose feeling in your breasts and for a while it can feel quite strange. There is a lot of emotion that goes into this life saving procedure that I find often goes unspoken simply because it is indeed life saving and you feel “lucky”. Regardless of what you hear and see it can be a tricky recovery depending on your health and circumstances.

“But you are ok now, right? The cancer is gone? It has not spread?” Oh how many times I heard this following my mastectomy. And of course I was happier than heaven to be alive and clear of cancer. I was in celebration mode. The call I got that the lymph nodes were clear when my doctor said “Good news!” on the phone following my mastectomy and reconstruction was music to my family and I’s ears. I do not want to insult anyone who has had cancer spread or have a loved one who has had it spread and is living with or battling the disease or worse to get the wrong idea here. To have had the offending disease out of me was an amazing feeling. After all in my case cancer came back to visit even after an advanced margin lumpectomy and radiation, a choice that was made due to the time frame, insurance and my worrisome health issues the first time. So if luck has anything to do with it yes I was lucky and I am grateful. 

However it is still very important to understand that you lose a part of you, too. And it is ok to mourn that part of you. It still changed a vital part of me. It took my breasts. My real breasts. And I was kind of fond of my real ones. They were not big. They certainly had passed any perky stage they may have ever had. They had finally smoothed out from the first cancer surgery scar and radiation damage. But they were mine. The real ones. I had no desire for new fake ones. And yet I had no choice. A lot had been taken from me. My daughter. A great deal of my health. My uterus and please don’t think, especially after not being able to have children, that a hysterectomy was easy either. And giving up my breasts was not easy. I did not fight it. But I certainly did not like it.

A few days ago one of my very spirited and intelligent friends from high school, who also has a great sense of self and humor, posted a photo of actress Phoebe Cates topless from the 80’s movie “Fast Times At Ridgemont High” simply because she thought her breasts were lovely. It not only sparked a great thread of conversation but someone under her private friend settings reported it causing even more conversation about why the female breasts are still considered a necessary cover-up in western modern society. I am not going to go there because that is a big subject for someone else’s blog. But for me I remember glancing at the photo in my feed and thinking “Those are nice. I miss my real ones.” 

And yet I did not feel bad about it. I did not feel envious. It was then that I realized it has been four years that I gave them up and I have at long last made peace with them. As I await being strong enough as well as have the extra financial means (insurance covers continued reconstruction issues for breast cancer but as we all know insurance does not get you very far in most aspects these days) for a third surgery to correct the cancer side where there is skin stretching damage from radiation five years ago I am ok with it. It took a while. It took a long time to get used to how odd they felt or should I say did not feel. It took a while to find bras that I liked. It took a very long time to get used to seeing my reflection in the mirror after a shower. It took a whole lot of getting used to in general. For a long time. And that is ok. That is what I want people to understand. Giving up your real breasts, even in the face of it saving your life, is hard. And it is ok to admit that and deal with that while you move forward with it. You don’t always have to go around feeling “lucky”. Luck has nothing to do with it. 

It is now over 24 hours later since I started this blog. My best friend came through beautifully so far which is what we all expected. She cracked me up, as I knew she would, from her hospital bed with texts last night. She is one of the strongest people I know. She has been through her own share of trauma like myself. And when her husband told me yesterday afternoon that the cancer was all clear I bursted into happy tears sitting in my car. Tears of joy, relief but yet…still a little mournful. Every woman is different. Each woman will deal with this in her own way. In her own time. Because losing your breasts regardless of the reason is still...kind of a big deal. 

Juggling and Struggling and Living My Life

The theme for this year is “I choose to: _______”

As I “struggle to juggle” so many things this month to get ready for a major family vacation to Europe, complete three big design projects, work on my own projects that are so important to me in the studio and my business, deal with the early stages of getting our house ready to put on the market, face one last surgery upon my return as a result of the ongoing double mastectomy from breast cancer in 2011 all while dealing with lower spoons, pain, migraines and other issues than even normal I am almost glad to have the distraction of once again taking time out to write for Invisible Illness Week.

That old familiar feeling washed over me in the past few weeks of being completely overwhelmed as well as feeling judged by others, which I thought I had mostly overcome or at least the judgment part. A few years ago when I put myself out there about my illness and started this blog it was because I had reached a point of strength where what others thought about me was no longer that important. I wanted to reach out and let people like myself know they are not alone and they do not have to hide. But I think it is normal to revisit these feelings from time to time once you reach that point as I have. Especially when people make comments to me that do not sync with their previous attitude of understanding where I am coming from and it hurts or takes me by surprise. I think when people see me at times of functioning as “normal”, even if they understand and know I have such an illness, they may subconsciously forget. Perhaps they get used to what they see or feel is “my old self” and they think you are either better or getting really good at ignoring your illness so you no longer have the burdens you once did. There is nothing worse to me when I actually have to remind them that no…I really sincerely cannot do anything today. I really do have to take care of myself and I do not have a choice. This is not often but it seems since this past winter and spring it happened on more than one occasion and left me just a tad battle scarred on the heart. And that is something I obviously want to avoid because it just contributes to my health in a negative way.

I started off this late spring and summer having a few more spoons to enjoy getting together with friends and family, which was really nice. But as the summer moved along into early fall and the work and other obligations started to pile up, my spoons began to waiver in quantity. I had to cancel several plans in the past month that I was really looking forward to. But that is just how it is. Most of the time I can live with that “background noise” I mentioned in a much earlier blog from 2011. But I also know if the background noise is getting too loud meaning my pain, fatigue and other symptoms are starting to be more pronounced and I know I have to be extra careful. I have to have the energy to get through work and the basic things so that I do not become sicker and wind up in bed or not being able to do the big things my family and I have planned for so long-like this trip together. And planning such a big trip with my illness and all the responsibilities that come with it has me a bit snowed under despite months of planning, making lists and research.

So…other things are just going to have to take a back seat for a while so that I can get the most out of this trip and give myself the gift of peace of mind that hey, once again, if I am upsetting anyone due to my lack of time and participation that is just going to be the way it is. Those blogging or joining invisible illness week for the first time might be thinking…how am I doing all of this? I can tell you it is not easy. About three years ago, if you had told me I would be managing things a little better at least for now, I may have not believed you. And I still have a long way to go. So if you are joining me now please take heart…this is where I am now. Does not mean I do not still spend those days in bed or those weekends in my pj’s resting and working in my studio just to spare a few spoons. I just know well enough now what it is I absolutely have to do to participate best I can in my life. And take care of myself…without feeling selfish. Because as I originally said on this blog when I started it, if I do not, I am no good for anyone else.

I choose to: “LIVE MY LIFE”.

Best Regards,

MK

Spring

Lingering fatigue from last years surgeries, the holidays, two very draining colds, keeping up with work in the studio and at the office plus just the daily grind in general has had me greatly behind in just about everything. Seriously, I am not kidding. I still have a basket of Christmas tablecloths and napkins that need to be treated and soaked in the laundry. I’ve missed work and pay and a lot of things lately due to flare-ups and I have had my bad days for sure. Fighting a deep sadness that never seems to quite let up enough and yet at the same time embracing life and feeling so lucky to be alive and be with the ones I love can at times be mentally draining. To look at my husband and feel so lucky to live in his kind of love, to be able to love him and greet each day with gratitude is a gift we never waste though.

I want to talk about spring and what it means to me-or at least that is how it started out about a month ago. Then my step mom, a talented and gifted writer, sent me her latest blog piece to my husband and I asking our permission to publish it. And as I sat reading it, tears streaming down my face, I felt so loved. She somehow managed to beautifully capture our lives in a way even though we just want to live and make the very best of this life regardless of our circumstances. Plus I often want people to know that really, I am not feeling sorry for myself. I am just trying to share and reach out to those who might find understanding and comfort from what I write that might reflect that of their own lives, like dealing with an autoimmune disease. In just a few elegant paragraphs she did this because she had been pondering the meaning of the word “reconstruction”. This she did regarding my second phase of breast cancer reconstructive surgery last year. The medical community I feel is relieved to call it this as opposed to “double mastectomy with reconstruction” which is really what it is. The medical bills even state “breast reconstruction surgery” as if I went in for a boob job for heavens sake. I find it insulting in a way the same as I did when an obviously thoughtless emergency room doctor had the audacity to refer to my daughter’s stillborn birth as a miscarriage seven years ago. In all fairness, I feel the medical community will do this sometimes to take the real meaning from something as if to soften the blow. But trust me, that is another story for another blog.

Spring. Our dogwood tree lined street is working magic right now as the trees puff each day with beautiful little white blossoms and the breeze carries the white petals like snow to the ground. It is a gift from nature like no other. Last year, the climate was so confused and so hot early on, that the trees never even blossomed and went straight to green which given my situation last year was disappointing but also somewhat symbolic. All around the grass is turning greener, the flowers are blooming and our courtyard is teaming with honeybees and humming birds. Baby lizards tease my little dog in his path and baby birds are discovering song. This season is, as for a lot of people, a sort of a symbol of renewal. There are a lot of “re” words you could use to describe it. Revival. Rejuvenation. Restoration. Or perhaps...reconstruction.

Plants and trees seem to “reconstruct” themselves each year. And sometimes not always in the same way even though we have our habit of expectation. I told my husband in the garden the other day “That hydrangea plant...that damn thing grows mostly green leaves in the back of the air conditioner unit now with a few puffs of flowers each year. It is not really the same anymore. Mostly a big, green bush and only a few colorful sprouts way at the bottom where you cannot see them.” I want to take this thing out and “reconstruct” this part of the garden with a small tree and new hydrangeas. My husband does not argue, but he does make a plea for the poor confused hydrangea plant to either relocate it or let it be and “see what happens.” I digress. “Ok, let it be. But this year if it pulls the same thing..” “Then we will take it out for sure” he says. Poor hydrangea. For whatever reason it has been changing and adapting the best it can. It is not perfect just like myself and all things. But it is still beautiful in it’s own way. Just not in the way it used to be presenting us with beautiful blue pink blooms all over. It one day, for whatever reason decided to migrate behind the AC unit and mostly flower leaves. Beautiful, rich cool green leaves. How could I, of all people, argue with that?

The fact is I wanted to write about how spring is important to me in it’s sense of “renewal” and that although some people do not care about the holidays that pepper it (Passover, Good Friday, Easter Sunday) I have always found that holidays and their meanings aside, it is a celebration of the new season with your family. I have such happy memories of it as a child. The dresses my mother would so lovingly pick out or sew. How I adored Easter egg hunting so very much I begged family all day long to hide them again and again. And watching “The Wizard of Oz” in the evening while eating the ears off my chocolate bunny. Getting to see all my aunts and uncles and cousins. The happy sound of relatives visiting and the heavenly smell of Easter Torte bread, warm from the oven, smothered in butter. All the new baby critters being born, the rainbow of beautiful colorful flowers and hearing the birds sing.

And that sadness I fight…it comes with a heavy wave because it is not the same anymore for me. On Sunday I opened up an ad in the paper and saw the most beautiful little girls dress dawned with pink butterflies. There is no doubt I would have wanted that for my little Sarah. I flip through all the ads for beautiful Easter baskets and candy and pretty things and a lump comes into my throat because she would have been around seven years old this early May. She would have been at a wonderful age and we would have been really getting to know her as a little person and the joy I would have felt making her “spring” fun and magical leaves me so empty. My love for her is so deep and so rock solid that sometimes I cannot bare it. I decide it is torture, and dump all the tempting Easter ads into the recycle. Mine will come in the form of flowers and decorations for her grave marker. She is with me at all times, not necessarily at Precious Love, the site at which her body rests. But people sometimes do not understand it is comforting to a parent, especially for a mother, to visit and decorate the site of their lost child. That is all they have, really. They see something that reminds them of their child and that’s the only place they feel they can share it. We had so much to share; so much to give. When I was little my mother took those large plastic eggs pantyhose used to come in and while I took my naps each afternoon she so beautifully painted each one with flowers and polka dots and stripes. She then filled them with candy and toys and money for Easter morning. I never forgot those. I wish I still had one. I played with them for years. My mother is a gifted and loving artist. The things she made me on our budget over the years to keep me entertained I guess is a big chunk missing in my life because I wanted to pass this on to my daughter. To show her the wonders of creativity and the beauty of our world as my Mom and her mother did for her. How she always pointed out things in nature to me-animals, flowers that were blooming, how a plant looked like a grumpy man. My Mom made my life beautiful. She still does.

 

Celebrating Spring with my
husband seeing the baby
Fennec fox brothers at the
Santa Barbara Zoo.

I missed Easter last year. I came home from the hospital and it passed peacefully through our house without much sentiment, which I admit, made it easier. That and pain meds. This year I will be spending Easter with my Mom, something of which I am so grateful for. It will be quiet and a bit sad for me-not like Thanksgiving where we were blessed at the last minute with family and friends and their amazing children which just brought a piece of the past my heart had been missing for so long back and had been the medicine my mind needed. Gone are the springs of my youth and my past. But my Mom and I are close and I know with her, we will welcome another year of renewal. We will praise spring. Maybe even rejuvenation for another year to conquer. I will miss my husband terribly. He will be visiting his aging Uncle in Nevada with my brother-in-law, which is a trip long overdue and turned out to be the only weekend schedules with work would accommodate. Hopefully this is his form of “re” for another year. To see his Uncle. To get away. I somewhat envy this. So, I close with the link from my stepmother, Betsy, in tribute to my husband and I today and all of those who have found themselves these past years in extraordinary circumstances especially with the ones they love and their health. It only takes a moment to read, and I could not express myself the way she so perfectly does here:

http://elizabethmarroblog.com/2013/03/26/reconstruction-day/#comment-109

Happy Spring. 

HOLDING OURSELVES HIGH

I may have touched a little on politics in a way on my blog here before because I have had to share my thoughts on how access to affordable health care impacts those of us with an invisible illness just as it does someone with a visible one.  That said I am going to get a bit off topic with this impromptu blog today to share my thoughts on the now decided presidential election.

Last night I was one of those people who breathed a little sigh of relief because of some of the choices America made were that of my choices. But I also felt very concerned about some of the other choices that were decided that were not that of mine. But the general feeling I have been having for a while regarding our leaders in public service as well as the issues presented as measures is that they really only do so much for our everyday lives. That it is primarily up to us as individual people to try to take the most responsibility for our own lives and our destiny as possible. Grant it elections are important. I am not casting that aside. We hire and pay these people to try and uphold the country in the manner we (hopefully) will see fit even if not perfect. But the fact of the matter is what we do each day is even more important.

Apparently I am not alone here. Several posts on Facebook this morning gravitated towards the same thing. A friend posted a sign that basically said if you want change to try the following as it listed basic things like eating local, organic food. Avoiding fast food. Avoid big box corporate stores or other Chinese import stores. Buy used instead of new. Stop using credit cards. You get the picture. And while not all of us are able to accommodate or afford these better choices in our lives simply due to necessity, even if you committed to one or two of them, it would be a positive change. For instance, I have long been an advocate of eating better and living proof that doing so can improve a medical condition. Maybe not cure it but improve it greatly. I am not always a slave to it, but I do my best. A gluten-free, organic, non-GMO and mostly vegan diet is not an easy act to follow, but it is possible to do a great percentage of the time. This means less medication to counteract the side effects of what the other types of edible choices out there can do to me which in turn is less money out of pocket and therefore fewer trips to the doctor. And there is a reward that is the biggest incentive-I feel better. And when I feel better, it is not just better for me but my family and friends and those who need me. I can be more productive and balanced. And that is just a spec of dust on the idea of personal responsibility.

We can to some extent be in charge of our own destiny. We can try to make a difference in our own lives as well as someone else that is in need. Even living with an illness, we can make changes that will be more positive for our families, our communities and ourselves as a whole. Even if you just picked one thing to start with you think you could handle, it is better than nothing. It is a beginning on reaching inside yourself for the inner strength you know is there. And while it is important to keep up with what is going on in our country and our world, while being educated about the issues we face as a whole is crucial, it does little good to flood ourselves with the 24 hour media that comes at us from every corner. So maybe it should not get so much attention. Turn it off and turn your life on instead.

The presidential election has been decided for the next four years. That means if we are lucky to be alive and well as we can be we get another four years. Another four years to move forward. To try and grasp where we want to be ourselves in four years. What was not working for us the last four years that we were personally doing? What should we change in our own lives to make it better? What would we like to try and accomplish in four years? To reach such goals, even if just one or two, so when we go to the polls in another four years we can use it sort of as our own marking in time to look back and see where we have been, and where we are hopefully going. This may be more challenging for those of us with medical conditions but I find that sometimes we can set examples and inspire quite possibly better because of this. So for my next four years as President of myself, I start with this idea however small. After all, we owe it to ourselves. You owe it to yourself. And we owe it to our country as well. 

I AM BACK.

* Due to my invisible illness itself, I was unable to participate in Invisible Illness Week 2012 this past September as hoped. However, I plan to blog again soon on this subject regardless. Thank you for your support!

Well…sort of! I cannot believe it has been a whole year since I started this blog. And as I prepare to do my best to start blogging for Invisible Illness Week 2012 I thought what better time to make a little pre-week introduction for right now I am in the throws of beginning one of my famous Fibromyalgia flares. Oh joy!

…AND I AM LOOKING BACK

A year ago I had made some positive changes in my life to try and condition my mind for my “new normal”. Part of that was starting this blog, which as I had mentioned before, took a great deal of courage. Normally I am a very private person. But I felt the need to put myself out there so I could help others as well as myself. With some mild improvements in my care due to my doctors from both the medical and holistic perspective, I was starting to feel like I was living a little again and that things were once again becoming possible. Maybe not at the pace or level I had once dreamed of, but life was feeling good again just in a different way. As I have written about before, managing my illness as well as accepting it was key. Support from my family and my friends were crucial. For people to know that this is how it is, and I was not going to apologize for it anymore. That I was not going to worry about anyone’s judgment or approval. For it was no longer important to me. What was important was that I felt confidant enough to live my life regardless of what others thought of me and on my terms with myself. What mattered the most was that the people I surrounded myself with that wanted to be part of my life accepted me for who I was as I did them.

Getting to this point was not easy. And there are times when I still doubt myself. “If I only had not had extra sugar today or that second cup of coffee I might not be in so much pain and so fatigued.” An unreasonable thing to ask of someone who had to be up early for work and other important things I was trying my best not to have to cancel and so forth for several straight days in a row. “Stop it!” I tell myself. “You did what you could. You are doing what you can. You will do what you have to do based on what you can handle. You are being too hard on yourself.” Wow-I could not do that just a year and a half ago. I pushed myself. I hid. I made excuses as to why I could not commit to things. I cannot tell you what a relief it is to know that when I have to I can say “I am not going to be able to make it, I am just too tired and I have to be sure I am ok to work tomorrow” without feeling pangs of guilt from the person on the receiving end. It has actually made it…easier….to keep more commitments because just removing that exhausting thought process of “What if I disappoint them?” from my  mind gives me the freedom to go forward more peacefully. To know that if I do keep the commitment I am not going to have to worry if I have to rest a lot, sit down more or whatever it takes to keep up.

And so there I was on a sunny afternoon…Friday September 15 to be exact, in the radiology office awaiting my yearly mammogram checkup. I had actually forgotten about it. I had thought it was a week later, so the phone call reminding me of the appointment caught me by surprise the day before. Busy in my studio up until the last minute I changed and headed off to the appointment that I had seriously thought of canceling. I really was not in the mood to drive out there, to wait around, and to deal with any of it. Sometimes it seems as if my life is a seemingly endless barrage of doctor and test appointments and I get burned out. The breast cancer had a 5% chance or returning after surgery and radiation and my last six-month mammogram had been clear. So although I had been telling myself from the call the night before that it would probably be fine…there was a small part of me that had almost this odd premonition about it. What if my dread of dealing with this today has something to do with what the results might be? Nah, I thought to myself. That is just negative thinking trying to take over my brain. Even my husband told me later that day he had felt the same way. So as I sat flipping through a travel magazine smelling freshly brewed coffee one of the nurses has just made I began to relax and get excited about traveling again and put the silly thoughts out of my mind. My family and I had been planning a trip to Italy together and my husband had never been and I was truly getting really excited about the idea. I was feeling positive about doing things and about going forward. And then they called me in for the mammogram. And the rest is history.

No, really, I mean history, thank goodness! Because from the moment Dr. I-Have-No-Real-Bedside-Manner-At-All-And-Even-Though-I-Do-This-For-A-Living-I-Am-Clearly-Out-Of-Touch gave me the suspiciously bad news it was only recently I that I felt this detour was coming to and end. A detour of pain, surgeries, horrible flares, medication fogs and facing my own mortality. And only within the past month did I finally start to feel like I got off that dusty nowhere back road and found my way back to the main one again lined with trees and promises. As always, it may have not been too apparent on the outside of me or even in my last blogs, but it really took a toll on me. The two surgeries left me more fatigued and exhausted than even I expected with autoimmune issues. But the end result is that I am grateful to be alive and doing better…and blogging once again for Invisible Illness Week 2012.

So today after over a week of work, working in my studio, working on my home and not getting enough rest I have that feeling of overspending my spoons.  I am fresh out. I knew it was coming, but I also know that is how life is sometimes as a spoonie. It is like the spoonie credit company called and said they were temporarily deactivating my card. “You hit the wall, kid. We will be happy to activate your card again once you make some rest payments.”

And with that, I re-introduce my blog and myself for Invisible Illness Week 2012. I look forward to taking part in the San Diego online conference as well as reading all the other wonderful blogs out there.

* My regular “editors” are not available for this blog today, so you will have to excuse any errors you may find. Being able to even type today with the pain searing in my hands and arms along with some extra brain fog is often a recipe for mistakes here and there! 

CHANGE IT.

I should not be up this late…I know I will regret it. But I just could not imagine shutting down for a bit for surgery without a word or two about the past few days which although have been tiring, challenging and emotional have been more rewarding than anything else.

Fretting almost frantically that I was ill prepared for this weeks big undertaking, I decided to press on best I could with a different plan in mind: what was important to me. Not the constant upkeep of the house, the food shopping or getting all my “ducks in a row” so to speak…but to just do what I needed to do. After all my last blog was about the fact that I had been feeling extremely anxious and ill at ease because of this. So be it.

But it is strange how what you really seek can come about in unexpected packages.

Last week, a simple post on my friends Facebook Timeline alerted the community of artists here in the LA area connected to her that a family was desperately in need because their child has a life threatening and rare health condition, and current insurance conditions are not available or adequate. Although the website posted by the family tells their heartbreaking story (they have sadly already lost one precious child to this type of illness, an unfortunate experience I can identify with) with opportunities to donate money directly, that was not the idea here. A selfless friend, already experiencing her own big-life issues (her mother was expected to pass away this week and her father very ill as well) had quickly organized an art show for artists to create artwork or donate existing artwork for an auction to see if money could be raised to help the family. It was like striking a match to hay.

Within just 48 hours I saw this post take hold as people dropped everything and went to work creating art or digging through their existing collections and portfolios for something worthy of the cause. I saw myself as my friends posted my friends post. And not long after, that art started to appear. People scanned what they had did, or had done, and posted it to their pages. Inspired, I went to work on my own. My new thing lately is-just create it. It does not have to be perfect, just go for it. So Sunday afternoon, after catching up on my sleep from another event in which I participated to raise money for the museum my husband works for, I came up with a little piece to donate to the show. My mother also donated one of her past beautiful works and my cousin sent three original pottery pieces she created perfectly boxed and shipped faster than I had even expected. And one of my favorite parts of this little adventure is it brought an old friend back into my life I had gone to high school with and worked with during college. We chatted for an hour catching up whilst making arrangements to get her piece here and talked about that there had to be a bigger reason this little boy is was very ill had brought so many people together. The next day my two close friends and their children got together with me so I could transfer all the artwork to them for the auction and accompany me to visit the grave of my daughter at the cemetery with beautiful flowers and Easter trinkets. I, along with one of my friends, had a screaming migraine during all of this, but somehow we managed as usual to ignore the “background noise” and be as present as possible. At the end of a long day with little sleep and a lot of pain, I was filled with nothing but gratitude for my family and friends love, my health, and my life in general.

As I folded laundry tonight anticipating a week or more of needing clean and comfortable sweats and pajamas for the initial recovery, I thought, wow. I am standing here folding laundry. I was able to get something I enjoyed doing in my studio this week. I just had a great dinner with my Mom and husband and my father and step mom visit tomorrow to help take care of me. My friends cared and loved me enough to be sure I was not alone (since my husband had to work) to visit my precious daughter at the cemetery as they always have. That I had a great lunch out with them and my Godson and the other children laughing and having a good time. That I am HERE. That I will be ok. And I might grumble and complain, but I am HERE. It hit me again how lucky I am.

So if I am lucky enough to be writing this right now then I can try, in even the smallest way, to change something. Maybe not just myself, but the lives of others, for good. My long lost high school friend said my posts had been very inspiring to people I did not even know. I was very touched and encouraged by this. And now I will get to the point…(hey, cut me some slack here, it is late, and this is not the New York Times or anything like that!)

The chiropractor I work for a few days a week always has me put a new quote up on the dry erase board each month to inspire patients. Today’s quote: "If you don't like something, change it: if you can't change it, change the way you think about it." from artist Mary Engelbreit. Interestingly enough, this same quote was shared this evening on Facebook by cancer survivor and blogger from The Silver Pen:

Dr. Angelou's might be slightly different, but it is all the same. And I take this as a sign. Change the way I think about stuff I cannot change. I do not like the fact that I have to go back into surgery this Friday and do the whole process over again. As a matter of fact I have been downright selfish about it moaning and complaining to my husband and family and select friends that I just dread it. That I hate that my life is getting interrupted again with days on end of healing and not being able to do much- not to mention having to rely on others for help. That all over again, it will leave me tired and out of shape and behind in all I want to do and accomplish in the face of Fibromyalgia. That I am so incredibly exhausted I feel like I have barely recovered from the last ordeal. But I also do not like the fact that we live in a country where an innocent child has to suffer because he or she has health issues that are out of financial reach. But you cannot fight city hall or the attitudes of those in this country who feel health care is a privilege. In the meantime, I can change the way I think about things like this. I can try to participate in helping the situation. I can change the way I think about my surgery this week because I am far luckier that is all I have to worry about when this child and this family times millions the world over, have way bigger and scarier life threatening things to deal with than I do. I often call this “getting out of yourself.” When my fibro allows me, it can be very liberating.

I am not minimizing what us spoonies go through on a daily basis. We can only do what we can do sometimes. We are not always able to get out and help others because our health simply will not allow it. But the times that we can do it? WATCH OUT!!

My very best to the Adam’s Family and although I will not be able to participate in the auction tomorrow night, I will be there in spirit, hoping every piece sells and provides some relief for them. And perhaps, it is just a start.

If you happen to be in the LA area, and you want to browse the amazing talented art of animation as well as other artists with good company, food and drink on Thursday April 5th, here is the information:

http://supporttheadams.com/2012/03/23/art-benefit-info/

FIBROMYALGIA & BREAST CANCER, SIMPLY PUT

I have wanted to write here the past couple of months, but every time I started something, I became lost. With so much information in my head and limited time and energy, I did not know where to start…or end. As I was watching Toni Braxton and Christine “Spoonie” Miserandino being interviewed about Lupus this evening, I started to cry. Just having them once again validate what it is like to be autoimmune was both comforting and yet as always, emotional. It has been one of those days. And as I quickly countdown the days until my next surgery with so much on my to-do list including appointments, work, events etc., I am feeling that familiar pressure. That pressure that reminds me…I can no longer stay up until 2 am because well, those days are over when you are a spoonie.

As my co-worker said to me this morning “There must be something in the air. I mean…my socks are pissing me off!” When she said that, I burst into laughter. I knew exactly what she meant (we have all had a bad sock day…you know those socks at the bottom of the drawer when you are behind with the laundry that slip down or have uncomfortable folded seams that cut into you and it just makes an irritating day well…more irritating? But you never throw them out?) My laughter must have been a bit infectious because she started laughing, too. We both needed it. “I know what you mean!” I choked “But the way you said it!” Well, you had to be there but you get the picture. Another person confessed to me later that morning that with all the pressure she was feeling as a single Mom and all that had been happening she went home and just cried it out after she received a traffic ticket to top off her day. And one of my closest friends, also an autoimmune patient, has spent the last 24 hours with a mind numbing migraine while taking care of her kids, her elderly and ill parents and everything else including attempting to care for herself, which is in dire need right now. She text me this evening that she had to go to three pharmacies to obtain the medication her doctor had prescribed for her migraine and I quote “why can’t it ever be simple?”

So that is when it hit me. I thought, let me make this simple.

I am overwhelmed. Tired. EXHAUSTED. I do not want to go back under the knife next week for the second half of my reconstruction  (another lovely four hours, another set of lovely drains, another six week recovery) despite that fact that yes…the cancer is out. Yes, I am very lucky and blessed I am not writing this with no hair on my head and chemo streaming through my veins. But still…. Fibromyalgia and cancer? Not a fun mix. Not an easy one. I got the “You look good!” thing a lot the past several months and frankly, I was honored and happy people thought so. I think the “good” they saw was the inner happiness that I had, within a few short months, survived cancer and dodged thyroid cancer. Sort of a rush of adrenaline that kept me going. And I took my good days and made the most of them. But my body has been telling me a different story. I store up just enough spoons for what I have to do, and then I hide out and muddle through everything else. It is a true story. And well, that is fine. It is what it is, and always has and will be.

However, I foolishly thought that between January and March I would feel better and catch up on everything and everyone. Call and/or write the people who have been so loving and supportive. Get some house projects finished? Get my mind and body ready for the next round? Write the great American novel. Discover a cure for mad cow disease. Heck, I can barely keep up with the laundry. And the extra feel-good time I have had has been spent trying to be with the ones closest to me, enjoy life, and well…try desperately to spend time in my studio doing what I love to feed my soul. Oh.. I should mention I have had to spend a lot of time on the phone and writing letters to bill companies and my insurance trying to straighten out various different mistakes (on their end, of course, big surprise) which takes a lot of energy and effort. This angers me, because it is a waste of time when I could be doing something far more productive with my healthy feeling hours. My Mom keeps telling me not to worry, everyone will understand. I hope they will. Because I am just well, behind schedule here. I even get worn out talking on the phone. When my Dad’s wife said to me recently during a phone call “I do not want to keep you long. I know with limited energy right now long phone calls can even wear you out.” I was so grateful to her that she pointed that out. I have had trouble just being on the phone for long periods of time lately and I feel badly when I can only talk for a short time to friends. With any luck, my thank you notes will get out by August. And I am kind of not kidding about that one!

So I guess the thing is…nothing is simple. In our minds…we try to make it so and I think in the process we just might wind up making it even more complicated trying to keep it easy. Sans pharmacies being lame enough to not have a common prescription in stock, I mean, really? And I should practice what I preach…or at least write about. Looking at my past blogs I need to take my own advice. So, tonight, that is what I am doing. If this reaches out to a few of you I feel better. I just want you to know that I am still very passionate about blogging for autoimmune diseases, cancer, art and life. And I plan to keep on doing so. But for now, I am still in the process of healing and getting ready for another healing phase. But at least I know what to expect this time. At least this time there will be no waiting for a daunting phone call with “the news.” I can see the light at the end of the tunnel. And despite everything, as always, it is quite marvelous.

So stay tuned…and stay patient. I am still here. Cheers.