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.

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Stop apologizing

I don’t often reblog a post from so when I do you know the person said something I think is important.  What Denise, from Hearing Elmo talks about is important.  We have to stop apologizing for our “normal”.  Please check out her site for many more important topics, Denise is an amazing advocate.

The other day my iPhone died before I was getting ready for bed. I was a little shocked, because I rarely have it just “die” on me. The new ones have batteries that last much longer – even if you are a frequent user of the device like I am. I stood there with dead […]

via My iPhone Lasts Longer Than I do — Hearing Elmo

I have a Facebook Page!

Yep, I’ve started a Facebook page, and I’d love it if you followed me there.  It’s a very easy way to get in touch with me.  All my post will be listed there and I do post little things there that I don’t post here, so jump on over there and Like my page.

Picnic With Ants on Facebook

I’m a doofus and can’t figure out how to get a picture from there to here.  Duh.

So here’s a picture that used to be the header to my blog, because I just love pictures.

ant and flower copy3

 

 

Blog Posts I’d like to Share

Ok, so I planned to enter more posts I’ve read that made an impact on me, but if you’ve read my last post you know I’ve been going through a mess.  I started this post before I started having the run on vertigo, and I really wanted to make sure everyone saw these wonderful posts.  There is a lot of good information out there and I’m ever so eager to share some of the things I’m learning.  (BTW, I’m feeling much better!!)

Recently I’ve been reading some really great posts and articles on-line and I’d really like to share a few.  I wish I’d written some of this great information.  So please take the time to read:

Markovich Photo Art

Markovich Photo Art

From ADD and So Much More, Madelyn Griffith-Haynie, CMC, MCC, SCAC takes on the subject of Loneliness ins a must read 3 part series:  Part 1 – The Importance of Community to Health  Part 2. –  Sliding Into Loneliness  Part 3  – When you’re longing for Connection

On Living with Hearing Loss, Shari Eberts asks the question Why is it Still OK to Make Fun of Hearing Loss?  If you have hearing loss, know someone who has hearing loss, or simply want understand the hearing loss world, you should check out this blog post and much of Shari’s blog.

Bipolar Barbie-Q takes on how it feels when you are in the throws of depression.  (this is a subject I plan to cover soon myself, but you need to read her post, it’s raw, and full of passion, and will give you a great understanding on how complicated depression is.  I’m the Queen of Run-On’s.

 

I hope you have a good read today.

 

 

 

I love this little book…so I’m passing it along to you for Chirstmas. :-)

A while back I stumbled upon Lisa Esile’s blog and well, she has a way of saying things that just makes me think…yeah, that makes so much sense….thanks.

She has this cute little book ebook that she gives away.

That’s right, she gives it away.

It is so cute…I just loved it.

I think you will to, so I wanted to pass it on to you.

Here’s the link for you to go and grab a copy and read it…look at it….(it has some cute illustrations).

7 Secrets Your Mind Doesn’t Want You To Know

It’s really short, and it makes you feel good.

I didn’t have anything to personally give you for Christmas this year so I thought I’d pass along Lise’s book!

I hope you like it!!

(So…just click on the picture, or the title of the book and it will take you to a page where you can download a copy of this cute little book.)

Happy Holidays!

Me and my blog…..it just is.

hearts gray scale

w. holcombe’s heART

After more thought, and feeling much love, I realized hearing the “criticisms” about my blog, and/or me, hit home because I was feeling critical about myself.  I don’t think of myself as a negative person, but I was feeling it, and didn’t even realize it.  My life has changed drastically over the last 4 or 5 years, and the one thing I felt I held on to was my ability to see the best of the situation.  I never asked “Why me?”  I said, “Why not me?”  This is very important to me.  This is a part of my very essence.   I was afraid I was losing me.

Let’s face it, the past couple of years have been very challenging for this household.  Yes, we’ve met these challenges head on, but they just kept coming…..and coming…and coming……..often the solutions have not been as easily forthcoming.

It has been wearing me down.  Much more than I realized.  Not one to dwell on things, I normally allow myself to feel the emotions that go along with a challenge then I make a plan, and deal with it.  “How do I handle this?”  “What can I do?”  “What’s the best way….????”   Unfortunately, many of the challenges I’ve had to face recently have been completely out of my control, or the resolution is not easily obtained.

  • My husband lost his job…..what can I do?  I asked myself that often.  I felt guilty that I couldn’t work.  I tried to get disability and was denied.  (yes I’m appealing, but it’s taking a long time.) Totally, out of my control.  No easy fix.
  • Sandy died.  My best friend.  My constant companion.  I felt lost.  In many ways I still do. I felt guilty.  I felt I let her down.  I know that’s not the case.  The grief has taken a lot out of me.  Out of my control.  No easy fix.
  • I’ve had added health issues.  Out of my control.  No easy fix.
  • My health issues have gotten worse.  Out of my control.  No easy fix.
  • My father was diagnosed with cancer.  Out of my control.
  • ect…ect…ect…….

Yep, I was having a hard time being me.  I’d look in the mirror and think, where are you?  I know you are in there somewhere….come out!   I was ready to hide.  After everything, I felt broken.  And I could not admit that, not even to myself.

I talked on here about my fears, my pain, everything.  I’ve been honest.  However, inside I could not wrap my head around the fact that I was really and truly scared that things would never get better.  No matter how many times I might have said it, and wanted to believe things would get better, the fact that they may not was driving me crazy.  The thought that things would not get any better…..that was just not acceptable.

Then I realized, I’m looking at this all wrong!  I’m thinking too much in the future.  I don’t know what the future may hold.  I have been freaking out over what has been happening, and I have been building up these stories in my mind about how my future might unfold.  These stories have not been great.  This is not a healthy way of thinking!   I cannot live in the future, no more than I can live in the past.  The only place I can live is in the present.  Yes, that sounds very Zen.  Yes, I’ve been reading a lot about this, but it makes sense.  If I’m constantly thinking about what tomorrow might bring, good or bad, I’m going to miss out on today.  That doesn’t mean I can’t make plans, but it does mean I’m not a slave to them and I’m not going to get all bent out of shape if something happens to change them.  It also means I’m not constantly looking back thinking, “I just want my old life back.”  that’s not going to happen, I’ve known that for a long time.  Focusing on the present gives me the opportunity to enjoy my life as it is, without disappointment about dreams that didn’t happen, or romanticizing about a past that I can’t have anymore.

In short, my outlook is changing.   Luckily, so are things around me.  Would my outlook be changing if things were continuing to be spiraling downward?  Yes, I think it would.  I think it has been, I just haven’t been writing about it here as much as I probably should have been.  It’s a work in progress, or to put it more correctly, I’m a work in progress.  I always will be.  So will this blog.

I want to share with my readers, my friends, this side of me.  It is time to share more of the side that is brave, positive, compassionate, and thankful!

Yes, I will continue to come here and speak open and honestly about everything – all of it!  I can’t help it, it’s who I am.  If you would have suggested that I close the blog, I would have turned it private and continued to write, just for me.  This stuff has to come out somewhere!  However, I want you to see how I am handling the rough patches,  how grateful I am for all the little things in my life, and how much I really do enjoy my life….”ants” and all.   But there will be times when I don’t handle things well, and you will continue to hear about that too.  It’s all part of living with chronic illnesses!

I’ve decided to challenge myself a bit.  Each week I plan to write a post called Attitude of Gratitude.  These posts will include things I’m grateful for that week.  These posts may include pictures, drawings, stories, words…..or some times it may just be one word….who knows.   I want to make sure I never let a week go by that I don’t think about things for which I’m grateful.  I try to do this every day, but we all know some days we just get a bit overwhelmed.

You are welcome to join me in this challenge.  We can make it an official challenge if people are interested.   I’m going to do it, for me, and hopefully to inspire others with chronic illnesses to look around and notice the little things that they can still be grateful for.

Thank you all for taking my Poll!  It was an overwhelming landslide that I should continue to write as I do.   I promise I will continue to write as open and honest as always.  I will continue to show the bad and the ugly sides of my illnesses, but I want to even it out and show the more positive sides too.  Yes, there really are some!

I’m so very grateful to have such wonderful friends!  (many who I have never met in person)

The comments and emails I received after my last post amazed me!  Thank you all so very much!

Sending the wrong message??

Illustration New England Boating

Illustration New England Boating

I started this blog because I needed it.

I needed to put a voice to my illnesses.  To help me get through.

I continued this blog because I felt it helped others.  It helped them to know they were not alone.  It helped to know that just because you have a chronic illness it doesn’t mean your life is over.   I thought I was sending a message that said, yes, this is all a part of me and I’m alright with that.  I have multiple chronic illnesses, some are invisible, some are not so invisible.   I work very hard not to dwell how my life has had to change because of my illnesses, I strive to focus on how happy my life is now.

I wanted to help others realize that their lives can be pretty darn great too.

Recently, it has been pointed out to me that I have failed.

Not only have I not succeeded in showing people I am satisfied with my life, I have failed in helping others realize they can be happy with their life after chronic illness hits.

This blog has never been all about the sunshine and roses part of the chronic illness world.  I do talk about every part of my life.  The good, the bad, and the very ugly parts.  I don’t hide.  I don’t want people who are ill to think they have to hide.   I’m beginning to think I may be wrong about that.  I hope not.

The past year….plus….has been extremely difficult for me.  I have had a lot of physical and mental challenges on both the home front and with my health issues.   Of course, these challenges have come across in my blog.  Every time I’ve written about a challenge, anything from my husband losing his job, to my increased vertigo attacks, I have tried to write each entry not just with pure emotion but with simple facts.  This is what is happening, this is how we are dealing with it…ect.   And I always try to end on a positive note.  After all, I really do not feel negative about everything that has happened.   Things happen to people, why should I be so different?   This is my life, illnesses and all.  Life is a gift, I’ll take mine the way it was given and I’ll make the most of it…..I’m learning how as I go.

Someone recently told me that my blog is a place I go to vent.  I agree, I do vent on here, sometimes.  I never thought that was all that I did.  I just went through ALL of my post from January 2013 until now, and I have to admit, if you just look at the surface, most of them do seem like they are simply me venting about what is going on.  Ironically, the past few months many of my posts have not been that kind of post.  I’ve had plenty to vent about, and have posted about some things that I feel were very important…things that should be “vented” about.  However, I’ve also written some pretty light-hearted posts.

I was also told recently that I can be a bit negative.  Well, not in those exact words, it was more like….people don’t want to hear negative things all the time…  I agree.   I didn’t think I was a negative person.  At least not all the time.  Recently, I have had some things to post about that needed to be talked about in a negative manner, for example, when a doctor treats you improperly.  Over all, I believe I have a more positive outlook about my life than negative.   It saddens me if that does not come across.

Today, I wrote someone in my family an email.  I hadn’t written in a while and apologized upfront, explaining that I had been having a rough month physically, but wasn’t going to talk about that and it was no excuse for not writing….then proceeded to write the email informing her of some positive things that were going on.  I soon got a reply telling me how UPBEAT I sounded, and how she hoped I felt as good as I sounded…..ect.   I was confused.  I did mention in the first sentence that my health had been bad this past month, but all she heard was the UPBEAT tone.   hmmmm.  Do I normally sound like a sourpuss?

All of this, combined with a lot of soul-searching lately has made me wonder, am I doing any good here?

Yes, I started this blog just to help me….it was a private blog in the beginning, just a journal.

However, as I learned to accept living with my illnesses I felt my blog blossom into something much more.  I felt it was touching others.  I wanted to help other people know they aren’t alone, and you can have a great life.   (Even if you have a lot of bad days.)

Let’s face it, it is easier to write when I’m having a hard time.  When I’m feeling great, I’m too busy trying to live every day the best I can!  On the bad days, I know my friends are here.

 

So I have a poll for you