A Mindful Monday

As I’ve wandered through the past couple of weeks I’ve realized how much I have strayed from my mindfulness practice and how much my Mindfulness Mondays helped keep me on track. Each Monday I was reminded how important mindfulness is and how to obtain it. It is time to refocus on this present moment with a few of my favorite quotes and a few photos from the desert.

Mindfulness isn’t difficult.
We just need to remember to do it.

Sharon Saltzberg

This quote is very meaningful for me right now as I remember how important mindfulness is, it is so easy to do, if only I remember to do it.

Mindfulness is simply
being aware of what is happening right now
without wishing it were different.
-Enjoying the pleasant without
holding on when it changes
(which it will)
-Being with the unpleasant without
fearing it will always be this way.
(which it won’t)

James Baraz

This quote by James Baraz is my all time favorite quote. Be with this day, whether it be pleasant or unpleasant, for it will always change.

Mindfulness means paying attention
in a particular way;
on purpose,
in the present moment,
and non-judgmentally.

Jon Kabat-Zinn

What I love most about this quote is the last word, “non-judmentally”. I am notorious for judging myself very harshly, and it has held me back in many ways. Another quote by Jon Kabat-Zinn, in part, says “Instead of ‘let it go’ we should probably say ‘let it be'”. I need to just let it be, and stay in the moment.

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Mini me update

Daffodil – Charlotte, NC
Wild Mexican Poppy – Tucson, AZ

I’m Still Here I didn’t mean to scare anyone with my last post, no I’m not closing my blog, I have just been feeling a little low lately and it’s been hard to put words together and write coherently. A little depression has gotten hold of me, but I’m coming out of it. I tried looking at everyone’s blogs today but my reader is not working right. I’ve been terribly homesick, I have a friend back home who has been extremely ill for months now and I can’t be there with her and it’s breaking my heart. I can only hope that my virtual support is helping a little. My sister hurt her knee pretty bad, I’d like to be there for her, but alas I can’t. I’m kinda sure that she wouldn’t allow anyone to take care of her, but I’d sure like to try. She’s taken care of me time and time again, it’s time for me to be the carer. And I really miss Spring in the Carolinas. Spring in the desert is beautiful in it’s own way, but it’s not like it is in the Southeast. There isn’t this sudden explosion of life everywhere! You open your door and flowers have bloomed overnight. Trees are suddenly green. It’s magical. I didn’t think I’d miss it so much, but I do. Stuart says he will miss the fall, so we have decided to go to Charleston, SC for our anniversary this year in September. Hopefully he can see a little bit of Fall weather, and we can see people we love. Looking forward to that makes me a bit less homesick and I think it helps my depression.

The Move and Service Dog About us moving…no we aren’t moving far away, we are still going to be in Tucson. This is just an inconvenience, but how we were told about it really pissed me off. Right now we are renting a house that we didn’t expect to be renting but a few months until we found a house to buy, but it ended up that we needed to wait a few months before we could commit to buying a house. We can start looking again in June…or July, I don’t remember which. Our landlord has been working on the guest house and told us he did not expect to have it completed by the time we would need to move. On Friday I was standing out by the pool talking with him for a long time about us going to meet with a dog breeder about getting a dog to train for my service dog, this has been in the works for a long time and he knew all about it, he has been excited for me. Nothing was mentioned about the possibility of then wanting to sell the house soon, or us having to move. That evening our utility bill was left on our door with a note on the envelope that said our lease ends April 30th and the guest house should be finished by then, so we need to discuss options. My stress meter jumped WAY HIGH! The thought of moving again and then having to move again a few months after that, simply threw me for a loop. I don’t blame them, it is a financial decision, not an emotional one, but it sure leaves us in a lurch. There is a possibility that we won’t have to move. They need to do some work on the house that may go into the summer, and they believe that if they don’t sell during the summer they will miss their window for the best profit because it has a pool. People don’t like to buy houses that have pools in the winter….weird. We will know in about a week, if we do have to move we’ll have at least a month to move. We will then have movers move our stuff to a storage locker and move into furnished corporate housing for a few months, that way it’s really only one move. We’d just just have our clothes and stuff, everything else would be packed and ready to go. After we came to that decision the stress was totally lifted. We decided to wait on getting a puppy right now to train, hopefully we can get one this winter. I’m still looking for just the right dog for me. I will be training my dog through HandiDogs here in Tucson, AZ. They are a hands on training facility helping you to train your own service dog. I will have a hearing and balance dog. I will talk more and more about this experience as it happens.

Migraine Specialist I saw a new neurologist who specializes in headaches. She was wonderful. She had read all of my chart before meeting me, she asked all kinds of questions that I can’t remember being asked before. Like “does sleep make your migraines go away?” I’ve had it suggested to me to try sleeping when I have a migraine, but no one has ever asked me if it worked. It doesn’t. I wonder what that means. She asked if I ever get a migraine when having a bowel movement. Sometimes. So many questions!! At the end of all the questions and realizing that I’ve tried everything out there and still have over 25 migraines a month we decided to try one of the new CGRP blocker migraine preventative medications. I chose Emgality because it has been shown to help cluster headaches too, but it is not approved by the FDA for that use yet. This medication comes in an injection that I give to myself with an autoinjector. I had the first dose on Friday, March 29th. I will write a post soon explaining more about what this medication is and my experiences with it. Please wish me luck with it. My doctor told me that her story is much like mine. I not only have chronic migraines, I have a constant daily headache that I’ve had since I was 11 years old, the day I first started my period I got a headache that never went away. My doctor told me that with this new medication she still gets migraines, she gets much fewer migraines, but she does get some. However, she no longer has her daily headache. At that moment I burst into tears. I was so thrilled for her, and the thought of not having pain every day constantly, I simply cannot fathom that.

On a completely different note, I’m getting my hair cut on Saturday. You may not recognize me. I have long naturally wavy, slightly curly hair, but it’s fine. It used to be thick until I went through menopause, sigh. The length is doing nothing for me. I wear it in a ponytail most of the time. So I’m getting it cut! Not sure exactly how short yet, I’m going to need advice from my stylist, but I think it’s going to be pretty short. I’m getting new glasses soon too, I’m just going to look so different. A new me.

Well, I’m up late because I’m fighting a gastritis attack, again. I finally ate some real food today for the first day in a week, and now I’m so nauseous I can’t sleep. I’m off to take a Phenergan and try to rest.

“Change is the only constant.” ~Heraclitus

Mindful Monday – Mental Illness

Today’s Mindfulness Monday is not really quotes on mindfulness, they are mindful quotes on mental health.  There are more quotes than usual, I actually found over 30 that I liked and finally cut it down to these 7.  After each quote I will explain why I chose that particular quote.  I hope you will bare with me, as most of you know I’m working through a mental health crisis of my own, and working on this post has helped me feel not so alone.  ***Please note that this post contains a frank discussion on mental health issues including suicide ideation.

“Beautiful fake smile.

All it takes is a beautiful fake smile

 to hide an injured soul and

they will never notice how broken you really are.”

~Robin Williams

I chose this quote because we I often use a fake smile to get through the day.  Whether it be because of my physical or mental illnesses, that fake smile makes others believe I’m okay, and that makes dealing with the general public, and sometimes even those closest to me, easier.  I don’t have to explain, I don’t have to deal with the awkwardness…..the fake smile, is a shield I use to deflect the judgments from others.  

“Be proud of every step

you take towards stability,

no matter how big or small.”

~Jessica AnnHardy

I have been feeling like all the work I’ve been doing to overcome this crisis has shown little improvement.  I chose this quote because it reminded me that even the smallest steps toward my stability are worth being proud of.

“I’m still me no matter

my mental health”

~Niki McBain

Earlier today I texted a friend how afraid I am that this is my new normal, all the anger, and simply being a bitch all the time.  I’m no longer a nice person.  I told her, “I feel like I’ve lost Wendy”  I chose this quote simply because it reassured me that Wendy is still in there somewhere.

“It’s exhausting to fight a war

inside your head

every single day.”

~Mickie Ann

If you don’t have a mental illness I don’t think you can ever understand this quote, if you do, I doubt I have to explain why I included it.  This constant battle going on in my head is driving me insane….or perhaps I’m insane is why I have the battle in the first place….these are the kind of questions that bombard me all the time lately.  Every… Single….Day

“Surviving a psychiatric crisis is one thing.

Overcoming one is something completely different.”

~Chris Curry

I hope to somehow understand this, and hopefully so will my husband.  Right now we are in survival mode, overcoming it is going to be a long, hard process.  (I’m not sure it will ever happen completely)

“The bravest thing I ever did

was continuing my life

when I wanted to die.”

~Juliette Lewis

Okay, I’m admitting something here so other’s my hear my pain, and will perhaps not feel so alone.  Each day since this crisis began has been a fight for my life.  More than once I’ve thought it would be best if I were not here.  I’m not being selfish, of looking for the easy way out.  I’m hurting the person I love most, over, and over, and over again.  When I’m having the most severe emotions, rage, despair….and the psychosis (auditory hallucinations)  I cannot see that removing myself from this world would hurt him worse, I can only see that I’m causing him so much pain, and at that moment I believe that if I’m wasn’t here it would be better for him…and others I love.  I want to remove myself from the situation.  Actually, that’s exactly it, I am simply trying my hardest to get away from the war inside me, I simply need to escape.  The pain is just too great.  Please do not judge me, if you do, keep it to yourself, my psyche can’t handle it right now.  I am not in danger, my husband and my psychiatrist know about this and I’m being watched….like a child….I hate it.

”You know when you’re in a bad dream

and you’re trying to run, punch, kick, or scream,

 and your body just won’t move?

You open your mouth and nothing comes out.

You feel frozen or in slow motion,

 and no matter how hard you try to fight it,

nothing changes.

That’s how it feels to battle mental illness.”

~Evyenia

When I read this quote I thought….Yes!!  It is often like that.  I feel like I scream and scream and even when I’m making noise it makes no sense.  I’m stuck, I can’t get out.  I just want me back again!  There are so many people who feel like they aren’t themselves after they start their psychiatric medication, especially those who are bipolar I, like me.  I will admit, when I first started my meds I wondered if the changes in my moods were making me less….me.  I was losing part of who I identified as me, but after I was stable for a while I realized that the real me was the stable person.  I no longer had times of extreme mood swings, I no longer did so many dangerous things, I felt more in control.  Yes, I missed being able to pain for days on end, I don’t feel I’ve been as creative, and I miss the times I could read 2-3 books in one day, but I don’t miss buying a car I couldn’t afford, or having sex with someone and not remembering it, or losing days that I don’t remember.  That wasn’t me.  When I’d relapse, which has never been as bad as this crisis, I’d run to my doctor immediately for help.  I didn’t like that feeling at all, I was suddenly not me.  And suddenly after 20+ years, I’m having a severe crisis.  It scares the hell out of me.  I will say, I think I’m better today than I was 2 weeks ago, but I still have a long way to go.

I just want to be Wendy again.

***by the way, the photo above is a self portrait I took a few years ago.  I haven’t been in the mood to take many pictures lately, and I felt this photo was appropriate.  (all right’s reserved)

Mindfulness Monday: depression

“For me mindfulness is like building a house,

so, the next time the tsunami

that depression is comes,

I’ll have a structure to resist it.”

Ruby Wax

 

“Regardless of how dark and downbeat

the places you may find yourself,

there always exists the potential

for another path.”

Richard Gilpin

 

“You don’t have to control

your thoughts.

You just have to let them

stop controlling you.”

David Millman

 

 

 Image: © Lorraine (filling in for Wendy; using the theme she had chosen)

I don’t mean to….(fighting depression)

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I don’t mean to stay away.

I don’t mean to make you worry.

I walk around in a daze lately, and can’t see through the fog.

I feel like I’m lost in the dark and the only lights I see are from the flames of hell.

I can’t tell  you why.

There is no real reason.

Sometimes I feel like I’m a pawn in someone else’s game.  I can see two demons hunched over a game board, we are the pieces they move.  We have no control over how the game is played; we can only hope they play fairly, but we all know that demons never play fair.

How can I feel so level headed and focused at one point and so out of control and totally depressed at the next.  What changed?

Sometimes the answer is “nothing”.  Other times, the answer is more complicated, but the thing is, it’s really not about what has happened on the outside, it’s all about what’s going on on the inside.

Right now I could actually write a huge list of things that have changed in my life, but none of them explain the extreme changes in my emotional state.

I’m not “letting things get to me”, nor am I “too sensitive”.  I’m falling apart from the inside out, and it has nothing to do with anything I am doing to myself.

Damn! Does that sound as stupid to any of you as it does to me?

I get so pissed off when someone tells me that they wish I didn’t let things get to me so much, or that they wish I wasn’t so sensitive….yeah well…yadayadayada.  I guess, it is all on me, isn’t it?  But then again…is it?  If it were up to me I sure wouldn’t allow things to “get to me”, and I wouldn’t be overly “sensitive”.  Heck, if it were up to me I’d be pretty friggin’ stoic sometimes, but I’m not, I simply can’t be like that.  I feel things, very deeply sometimes, I actually envy people who can “bury it” or “put walls up”, I can’t do that.  I’ve tried, oh how I’ve tried.  I really do envy those people…..sometimes…like now…not always.

Lately, all I want to do is eat, sleep, and cry.   In reality I’m not sleeping enough, but I’m spending a lot of time trying to; I’m eating too much, the weight gain proves it, and I’m either crying or pissed most of the time!  But I’m trying really, really hard not to be like that.  Heck, I don’t even know why I’m crying, and I sure can’t tell you what I’m so mad about.  Here’s the kicker, something will happen that doesn’t bother me at all and then the exact same thing can happen again and suddenly I’m so pissed I can’t think straight, or I’m crying so hard I can’t see.  What changed there?  So…is that all on me?  or is it out of my control?   More importantly, is this something that is just happening because of outside circumstances and will blow over, or does my medication need to be adjusted?  Honestly, I have no clue.  (I think it’s probably the later, or maybe a little bit of both?

Even with all I know about mental illness, (from my experiences with bipolar disorder, anxiety, and depression) I still feel like it’s my fault.  I never feel like that about another person’s battles with mental illness, why do I hold myself to a different standard?  Is it simply because I’m often told, “I wish you didn’t let things get to you so much”, or is it because I think this is a part of me that I should be able to control.  I don’t have a lot in my life that I feel I have control over, surely I can control how I react to things.  Isn’t that what I’ve been practicing mindfulness for?  Simply accepting the way things are and not wishing it to be different.  Well honey, I do wish it were different right now, but I am trying hard to accept that it just is the way it is, and I know for certain that things will change.  Nothing stays the same, everything changes, I can always take solace in this, unless I’m deep in depression, then I think, “Yes, things change, it could get so much worse!”  Aaahhhh….No!  I can’t get caught in the future trap!  You know that trap, the one in your mind that predicts a future…good or bad, watch out! it’s a trap!  Chances are that the future you prophesied will not turn out the way your mind told you it would; staying in the present is the only way to really deal with life’s challenges, it’s it?  I KNOW these things.  Why then, is it so very hard?

I will try to take it moment by moment and be kind to myself.

I’ll try not to stay away.

I don’t want you to worry.

 

one moment at a time, I’ll get through this

 

*photo taken at Tumacacori National Park by W. Holcombe.  Please do not use without permission.  All rights reserved.

I want to be a better friend to those who are in pain.

 

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*Content warning: This post discusses suicide and depression.

A friend of mine shared this on Facebook and I had to share it with you.

Why “I love you” and “Please reach out” are the crappiest things to post after someone has died by suicide – by Deanna Zandt

I have been one of those people with good intentions who have simply said the wrong things, and for that, I’m deeply sorry.  I have been there, yet I still don’t know what to say when a friend is in their darkest moments.  I need to always remember, I didn’t want to die because I didn’t feel loved, I simply wanted the pain to stop.  It helped me to have someone sit with me, hold my hand, and simply be a witness to my pain.  It helped me to know that they would help if they could, but that they didn’t try to force this false help on me.  I know these things, but it’s very hard to do these things for someone from afar.  I can’t simply sit with someone when they are in pain if I can’t be physically with them.  Often, when I reach out to someone through texts, or messages, I don’t know what to say after that initial contact. Silence is unacceptable when you are texting.  I want them to know that I care, and I simply want to be there for them.  I know I can’t fix it, but that doesn’t mean I don’t want to.

I also read another article I found interesting: Depression and Suicide: Being mindful and accepting of the pain of the dark days – by Jack C. Surguy M.A. 

Jack Surguy mentions something that I found helpful for me; by accepting that everything changes I can take solace in knowing that these feelings will not last forever.  (even if they feel like they will)  When I’m am suffering I know that it will end, that is actually my mantra when my emotions are all out of wack, “this will end”.  I guess it’s a variation on “this too shall pass”, but that sounds trite to me for some reason.  I promise no matter what you are going through right now, good, bad or indifferent, it will change.

I hope you find both of these articles interesting and possibly helpful.

Right now my wrist is killing me, so I need to stop typing, but after the deaths of Anthony Bourdain and Kate Spade, I felt I needed to talk about this, I want to do better.  I want my friends (you) to know I love them, that I care, and that I respect their pain.  I want them to know this every day, not just times like these.

 

* photo by W. Holcombe.  A red yucca plant viewed while lying down looking at the sky.  I found it stunning.

 

Christmas My Way – Redux

I posted this last year and I just read it again.  It made me happy.  I hope it makes you happy too.  This year, it’s Christmas my way again.

christmas-treeWhen I was 30 Christmases as I had known them changed forever.  That was the year my mother died.  Everything changed that year.  When the matriarch of the family dies the traditions die with her.  We tried to keep things alive, we had Christmas at my sister’s house as she had the only grandchild, things weren’t the same, but they were still nice.

Then there was a falling out between me and my niece.  Well not a falling out really, she got mad at me and refuses to be in my presence.  There isn’t much I can do, not that I haven’t tried, I have.  I could speculate all day what has happened between the two of us, but at this point it doesn’t make much difference.  This has however, ruined many relationships for me in my family.  Family Christmases became a thing of the past.

After Stuart and I became a family we started having Christmas celebrations with friends, as Stuart’s family lives a long way away and they don’t do much for the holiday anyway, again they are without the matriarch.  We normally celebrated Christmas day alone, just us, but leading up to that time, we went to parties and had people over to our home to celebrate.  It was a joyous time.  Then I got sick, and things changed.  We no longer got invited to parties.  I no longer felt that I could throw a party.  Then we moved so there is no likelihood of rekindling that time.  Truthfully, we’ve all changed so much, I don’t think there could be any rekindling even if we do move back to our old city, or if I miraculously got better.  Let’s be honest, my old friends really are just that, old friends.  They aren’t a part of my current life.

The last few years I’ve tried to be okay with the holiday.  But truth be told, I’ve been very depressed.  Depression runs rampant during this time of year and I was not immune.  I tried hard not to feel bad that I wasn’t surrounded by people.  I’ve had the one person near me who means the most to me, why should I be depressed?  Because Christmas is a time for friends and family.  A time for gatherings.  It was the two of us, yet I felt lonely.  And I felt guilty that I didn’t feel that it was enough.  I was depressed and felt guilty for being depressed.

Over the past few years I haven’t cared about decorations, we had no tree.  Why hassle with it?  No one would see it.  No one would care.  We’d have a little celebration.  We’d try, but it all seemed like we were just going through the motions.  Christmas is for groups of people, not just the two of us, and we didn’t have a family.

christams-decor
a little decorations making the holiday our own

This year has changed.  No we still don’t have a family, and we aren’t celebrating with any friends.  (We still don’t have any locally)  I changed.  I realized that Christmas really isn’t about family and friends.  It’s all about how you feel inside.  It’s not about giving the biggest gift it’s about giving to those in need.  It’s not about being with a bunch of people it’s about caring for those you are with.  It’s about caring for mankind.

This year I decided to decorate.  I never go all out like some people, that just isn’t me, but we put up a tree, and did a little decorating in the house.  It has made all the difference in our home.  We are in the spirit.  I understood just how much when my loving husband was looking through Amazon and found the National CASA Association Wish List, they provide Toys for Foster Kids, and told me that if I hadn’t purchased his presents yet he wanted the money to go to buying these kids presents.  How special is that?  So we took most of the money we planned to spend on our Christmas presents and bought Toys for Foster Kids.  Realize I did say most, I decided we needed a little gift exchange between the two of us, just a little something.

charlie-brown-puzzle
this is the actual puzzle we put together

We also have other traditions we are going to make sure we revitalize.  We always watch, It’s a Wonderful Life on Christmas Eve.  This has been a long standing tradition.  This year we are bringing back putting together the Charlie Brown Christmas puzzle, and our LEGO Christmas Train.  The train will be put together this weekend.  The puzzle goes together on Christmas day.  I don’t have a lot of traditions.  We cook a few little things as the time goes on, and health permits.  We’ve made some cookies so far, we’ll make spiced nuts to give to our neighbors, we’ll make a special breakfast on Christmas day….  The point is we are making this Holiday season ours.   And if at any time I can’t do something because I don’t feel like it we can postpone until later, or just decide not to do it.  All is good during our holiday celebration.

How can you make the season less depressing and more your own?  Remember that it really isn’t about family and friends, it’s about love and giving.  Love everyone and give to those in need.  Honor simple traditions that make you happy, we watch It’s a Wonderful Life.  Make new traditions, like putting together a themed puzzle on Christmas day.  Put up decorations if you want.  If you aren’t able to put up everything you want to, then either ask for help, or try to pick out your favorite decorations and put those out.  We have a small tree, and not all my ornaments fit, so I sit my favorites around as decorations.  The point is to make the holiday your holiday now.  Don’t try to make it what it was when you were well, or what it was when you were growing up, or any dream holiday you have been trying to live up to.  Make this holiday something special, on your own terms.

Sometimes no matter how much we try to make the holiday a pleasant thing for us, it just doesn’t work, depression takes over.  For those who get depressed during this time of year, remember that you are not alone.  If you need to reach out, please do so, there are numbers at the end of this post if you are in need.  If you need a friend to talk to please feel free to contact me.

  • U.S. National Suicide Prevention Lifeline: 1-800-273-8255  If you are having thoughts of suicide, call this number immediately.
  • Kristin Brooks Hope Center Hopeline: 1-800-784-2433  This hotline can help you cope with a range of depressive feelings.
  • Veterans Crisis Line: 1-800-273-8255 (press 1)  Responders understand the unique experiences of veterans.
  • United Way Helpline: 1-800-233-4357  They can aid you in locating a therapist, healthcare or basic necessities such as housing and food by directing you to local services.

Mudita – finding joy in the joy of others

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“Mudita is a word from Sanskrit and Pali that has no counterpart in English. It means sympathetic or unselfish joy, or joy in the good fortune of others.” (1)

I bring up Mudita now because those of us who are sick often find it very hard not being able to participate in celebrations this time of year.  We feel we are stuck on the outside just looking in, and as we look in we are envious.  We can’t feel joy.  Mudita is the opposite of envy.  When we feel mudita we feel joy in the joy of others.  We are genuinely happy that others are having a good time, even though we can’t join them.

This feeling doesn’t happen over night.  It’s hard to overcome those feelings of envy.  We don’t want to feel this way, but we have to admit, that’s the way we often feel when things come up and we can’t join in the fun.  We don’t feel joy in the fun the others are having, we feel sadness and anger that we can’t join them.

I first read about mudita when I read How To Be Sick by Toni Bernhard.  At the time my husband was playing games with a group of friends and I used to be envious that he had this group and I didn’t have anything like it.  He’d call me from there and I’d get this knot in my stomach and feel horrible because of this envy.  Then one day I realized how much he needed this time, how much he loved this activity and how much my envy hurt him.  (even though I thought I hid it well)  I remembered what I learned from reading Toni’s book.  I remembered mudita.  It didn’t happen overnight, but in time I started feeling joy when hubby would call from his game and sound excited about how things were going.  At first I faked it.  I knew I should feel joy for him so when I talked to him I put on a smile and told myself how happy I was for him and how much joy this made me feel.  Did I feel this at first.  No.  But after a while when he called I was truly happy.  I felt joy hearing how the night was going.  I was no longer faking it.

When trying to practice mudita start small.  Start with someone you don’t know.  When you see someone win a competition feel joy in their joy.  Then when you give a gift, feel the joy the receiver feels (that’s an easy one, I think).  Take it one step at a time and you will be surprised at how much joy you can feel when others feel joy.

It may not happen this holiday season, but perhaps when you can’t participate in the next celebration you might be able to find mudita, and feel joy in the joy of others.

I recommend all of Toni Bernhard’s books:  How to be Sick, How to Live Well with Chronic Pain and Illness, How to Wake Up.  If you are chronically ill and haven’t read it yet, be sure to read How to be Sick.  I’ve read it over and over and keep going back to it.  It helps me live the day.  It makes me feel like I can get through this and thrive.

For further reading on Mudita, of course you can check out Toni’s books, but also check out.

Christmas My Way

christmas-treeWhen I was 30 Christmases as I had known them changed forever.  That was the year my mother died.  Everything changed that year.  When the matriarch of the family dies the traditions die with her.  We tried to keep things alive, we had Christmas at my sister’s house as she had the only grandchild, things weren’t the same, but they were still nice.

Then there was a falling out between me and my niece.  Well not a falling out really, she got mad at me and refuses to be in my presence.  There isn’t much I can do, not that I haven’t tried, I have.  I could speculate all day what has happened between the two of us, but at this point it doesn’t make much difference.  This has however, ruined many relationships for me in my family.  Family Christmases became a thing of the past.

After Stuart and I became a family we started having Christmas celebrations with friends, as Stuart’s family lives a long way away and they don’t do much for the holiday anyway, again they are without the matriarch.  We normally celebrated Christmas day alone, just us, but leading up to that time, we went to parties and had people over to our home to celebrate.  It was a joyous time.  Then I got sick, and things changed.  We no longer got invited to parties.  I no longer felt that I could throw a party.  Then we moved so there is no likelihood of rekindling that time.  Truthfully, we’ve all changed so much, I don’t think there could be any rekindling even if we do move back to our old city, or if I miraculously got better.  Let’s be honest, my old friends really are just that, old friends.  They aren’t a part of my current life.

The last few years I’ve tried to be okay with the holiday.  But truth be told, I’ve been very depressed.  Depression runs rampant during this time of year and I was not immune.  I tried hard not to feel bad that I wasn’t surrounded by people.  I’ve had the one person near me who means the most to me, why should I be depressed?  Because Christmas is a time for friends and family.  A time for gatherings.  It was the two of us, yet I felt lonely.  And I felt guilty that I didn’t feel that it was enough.  I was depressed and felt guilty for being depressed.

Over the past few years I haven’t cared about decorations, we had no tree.  Why hassle with it?  No one would see it.  No one would care.  We’d have a little celebration.  We’d try, but it all seemed like we were just going through the motions.  Christmas is for groups of people, not just the two of us, and we didn’t have a family.

christams-decor
a little decorations making the holiday our own

This year has changed.  No we still don’t have a family, and we aren’t celebrating with any friends.  (We still don’t have any locally)  I changed.  I realized that Christmas really isn’t about family and friends.  It’s all about how you feel inside.  It’s not about giving the biggest gift it’s about giving to those in need.  It’s not about being with a bunch of people it’s about caring for those you are with.  It’s about caring for mankind.

This year I decided to decorate.  I never go all out like some people, that just isn’t me, but we put up a tree, and did a little decorating in the house.  It has made all the difference in our home.  We are in the spirit.  I understood just how much when my loving husband was looking through Amazon and found the National CASA Association Wish List, they provide Toys for Foster Kids, and told me that if I hadn’t purchased his presents yet he wanted the money to go to buying these kids presents.  How special is that?  So we took most of the money we planned to spend on our Christmas presents and bought Toys for Foster Kids.  Realize I did say most, I decided we needed a little gift exchange between the two of us, just a little something.

charlie-brown-puzzle
this is the actual puzzle we put together

We also have other traditions we are going to make sure we revitalize.  We always watch, It’s a Wonderful Life on Christmas Eve.  This has been a long standing tradition.  This year we are bringing back putting together the Charlie Brown Christmas puzzle, and our LEGO Christmas Train.  The train will be put together this weekend.  The puzzle goes together on Christmas day.  I don’t have a lot of traditions.  We cook a few little things as the time goes on, and health permits.  We’ve made some cookies so far, we’ll make spiced nuts to give to our neighbors, we’ll make a special breakfast on Christmas day….  The point is we are making this Holiday season ours.   And if at any time I can’t do something because I don’t feel like it we can postpone until later, or just decide not to do it.  All is good during our holiday celebration.

How can you make the season less depressing and more your own?  Remember that it really isn’t about family and friends, it’s about love and giving.  Love everyone and give to those in need.  Honor traditions you want to, we watch It’s a Wonderful Life.  Make new traditions, like putting together a themed puzzle on Christmas day.  Put up decorations if you want.  If you aren’t able to put up everything you want to, then either ask for help, or try to pick out your favorite decorations and put those out.  We have a small tree, and not all my ornaments fit, so I sit my favorites around as decorations.  The point is to make the holiday your holiday now.  Don’t try to make it what it was when you were well, or what it was when you were growing up, or any dream holiday you have been trying to live up to.  Make this holiday something special, on your own terms.

Sometimes no matter how much we try to make the holiday a pleasant thing for us, it just doesn’t work, depression takes over.  For those who get depressed during this time of year, remember that you are not alone.  If you need to reach out, please do so, there are numbers at the end of this post if you are in need.  If you need a friend to talk to please feel free to contact me.

  • U.S. National Suicide Prevention Lifeline: 1-800-273-8255  If you are having thoughts of suicide, call this number immediately.
  • Kristin Brooks Hope Center Hopeline: 1-800-784-2433  This hotline can help you cope with a range of depressive feelings.
  • Veterans Crisis Line: 1-800-273-8255 (press 1)  Responders understand the unique experiences of veterans.
  • United Way Helpline: 1-800-233-4357  They can aid you in locating a therapist, healthcare or basic necessities such as housing and food by directing you to local services.

Share Your Story – Nechama Sklar

I’m proud to present to first contributor to Share Your Story.  Nechama Sklar is a chronic illness warrior and writes at The Life You Gave Me.  After her story is a small bio about her.  I encourage you to jump over and check out this young woman’s blog.  I’m sure you will become a follower just like I am.

I am Nechama and I have a chronic disorder known as MCAS, mast cell activation syndrome. Basically, my cells are having way too much fun done, treating many things that should be harmless as dangerous invaders.

When I am exposed to one of those triggers, my body desperately tries to get rid of it, any way it can. It usually doesn’t go for the typical reactions. Coughing fights, muscle spasms, flushing, and chest tightness are more its style. On some occasions those tiny little cells that are supposed to protect me even send me into anaphylaxis, a life-threatening allergic reaction that can kill if not treated properly. And for some reason no one understands, my spasms can get so bad I cannot eat or drink.

Because my body is so busy trying to get rid of all the false threats, it doesn’t have time or cells left to deal with the serious things like infections. The way my doctor explained it to me, it’s like the police officer who is so focused on stopping the old lady from jaywalking that he misses the robber robbing the bank across the street.

My severe immunodeficiency means I pretty much never go more than a few days without an infection. And not just strep or sinus infections – though I get those too – all my infections seems to spread throughout my body, and I’ve gotten some crazy infections that required weeks of antibiotics, including an infection in my heart that landed me in the hospital for four weeks.

I also have some other disorders, like GERD (acid reflux), asthma and lots of other symptoms no one can make heads or tails of. So now you know you know a little bit about me.  

How do I keep going every day? I tell myself one crucial message I think anyone who a chronic illness or any kind of hardship needs to hear at least once a day: even if I were to fall a hundred times in one day, I would still get up. It’s a line from Rabbi Nachman of Breslov.

Because no matter how hard our lives are, no matter how many times life throws us to the floor, we stand everything to gain by getting up again. I have a strong support system that i made to fall back on at times like these. My support system is my family, my friends, my blog, my journal, groups on social media, mentors.

They have taught me that you can not choose your circumstances – only how you respond to them.You cannot choose your battles, you can choose how you fight them. And that keeps me going – knowing that I choose to take control over the one area where I have control – my reactions to circumstances.

You see, I used to believe I was a victim. But I’ve learned that I am a handpicked warrior.I have learned just how strong i can be when put to the test. I have learned that i can fight, fight to the death. I have learned that even though this illness has taken so much from me, it has given me strength  to endure – well – anything really.

Now, don’t get me wrong. How many times have I cried? How many times have I wanted to put my hands up in defeat and say, “I can’t any longer”? How many times have I told God that I am not strong enough, that I can’t take it anymore?

Many, many times. There have been days where I was sure that I would just break. Days where I really did break. Those were the worst times in my life, days where I felt I had no one to turn to and nowhere to run. So I cried. And I moped. And some days I just stayed in bed and watched movies.

There was one time when I was in-patient in the hospital. The hospital couldn’t figure out why I couldn’t eat, so they thought I had made it all up. They came into my room and told me I had an eating disorder and that they would send me to an eating disorder clinic for a few months, however long it took, until I would “let myself eat again.”

It was the most awful time in my life. Worse than the times I was going into anaphylaxis every three days. Worse than the time when they told me I had a heart infection and could go into septic shock at any time. Because there is no place lonelier on earth than when people don’t believe you.

After the hospital told me that, I went completely mute. I refused to speak to the doctors who could make such an awful, distorted accusation. My family and I were horrified at the claims. There was nothing in the world I wanted more than to eat! But my body just would not let me.

I just cried and cried into my prayer book. I cried until the pages were soaked. I turned to G~d and said, “How could you do this to me? I have no one left who believes in me. No one left who cares about the truth. No one but You. You carry me, and you hold me because I have nothing but rocks to walk on.”

And He did. The hospital sent in the head of the psych team to get me to talk, and when I saw he was listening, we had a good talk, and he believed me. He gave me an antispasmodic medicine and within half an hour, I was eating. (So much for the eating disorder claims.)

I quickly learned that there was a team of doctors from a different hospital that had believed me all along. Many of them were certain that I did not have an eating disorder.
Not long after came the Jewish holiday of Passover. It is the time were need celebrate our miraculous exodus from our bondage in Egypt.as a orthodox Jew, me and my family and the many other religious families in the hospital celebrated.

Never had I felt more free. I knew then, that miracles do happen. ~and no matter how tough it seems~ we can all have miracles~ if we believe.

Is my journey over? Not by a long shot. My cells and me fight every day. The flares never seem to end and there always seems to be more problems than solutions.

But deep down, whenever I feel like giving up, I know that all hope is not lost.

Another thing that has really been transformative for me is an incredible idea that I hear in a shiur by rabbi yy jacobson  that i have carried in my heart. He says that challenges are Hashem’s way of giving some of himself to us, connecting to us in the deepest way. When he draws us close, it is too much for us fragile humans.  We shatter from being so close. That is the pain of yissurim .

So be strong. And hold on tight to Hashem. Our challenges are not an act of torture, they are an act of love. An act of being brought close to Hashem.

If you believe in yourself, in your loved ones, in G~d, you just better believe it~ there are miracles. And they come to those who stay strong and believe.

nechama

I’m a 17-year-old teen ultra-orthodox Jew who lives in Brooklyn, NY.  I have MCAS , or mast cell activation syndrome- an allergic disorder that makes me allergic to- well, just about everything.

I have a primary immunodeficiency – a very long word that basically means I am also sick with one kind of infection or another.

I also have asthma and some form of autonomic dysfunction we are working on a diagnosis for.

I started my blog at a really low point in my life. I was in the hospital, physically unable to eat or drink. I would have given anything to eat or drink just one drop then.But the doctors in the hospital told me it was anxiety and were going to send me to an eating disorder clinic. I felt totally alone. I needed to share my feelings. I needed someone to hear me. And so, i let out my feelings to the world wide web. Thankfully, i got out of there safely, eating and drinking and not another word about eating disorders. Since then, my vision for my blog has expanded to include spreading awareness for all kinds of chronic disorders and providing support, coping skills and health tips for others with chronic illness.

I also run 2 online groups on facebook for those with chronic illness:teen mast cell warriors– for support, advice and encouragement for others teens and tweens fighting with a mast cell disease and let’s stay positive with chronic illness – a group with positivity challenges and quotes for staying happy with chronic illness.