The Day After SITS: Thank You!

Posted on January 11, 2012 by

It is impossible to thank everyone personally for their visit to my blog yesterday on my SITS Day. What can I say, my SITStahs  made me feel like a queen for a day!  It was so great to meet so many new friends and get such encouraging comments.

There were many moms with chronic illness who came over to say “Me too”.  A lot of them thanked me for being so open about what I am going through, especially with mental illnesses.  A lot of healthy women of course came too and thanked me for exposing them to another way of life, and for helping them deal with their own friends who had chronic illnesses.  Some people said my son was cute, some said my writing was funny and true. Some remarked on how well I write and express myself.  Some called my writing beautiful. Some told me the post they read was just what they needed to hear that day. Some thanked me for educating them.  Some said they would keep me in their prayers.  Many said I was inspiring and courageous and they told me to keep on going.

Really, it’s true, they said all that!

I am going through a particularly tough time right now with depression and all of your comments were just what I needed to read. Usually I tell people what my blog is about but yesterday all of you reminded me what Mama Sick represents.  What it means to so many people, especially to me.  You came yesterday, mostly for the first time, and all of you in one big clump of comments let me know that I am on the right track and that my message is being heard.

This funk I am in right now will NOT be forever, the words will flow freely again, I will get through this.  And whether you have been there, are there right now or want to educate yourself about what being mentally or physically ill is about, I hope you will continue on the journey with my family and me.

Thank you.

Image courtesy of The Paper Collector

 

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January 10th is my SITS Day!

Posted on January 9, 2012 by

Welcome to all!  I am the Featured Blogger today for the SITS Girls website. For my regular readers who don’t know what SITS (The Secret to Support) is all about, I am part of a group of more than 10,000 women bloggers dedicated to supporting each other by leaving comments and learning about blogging.  You may have heard of their “Bloggy Boot Camps”, one day conferences in major cities all over the country for women to learn how to be better bloggers, to network and just have some fun!  Being a Featured Blogger is a big deal so yay for me!

I am “Emily” and I started this blog when I became too sick to work after being diagnosed with Lupus.  I have a husband “Grant” who also suffers from chronic illnesses (lucky us!) and a five year old son, “Tyler”.  I have a weekly post theme called “Tuesdays With Tyler” in which I spotlight mostly the wonderful and occasionally the not so wonderful times of Tyler’s life.

I also have other physical illnesses such as Fibromyalgia and Chronic Fatigue, and mental illnesses such as Depression and Anxiety.  From Twitter and forums and support websites, I knew there were many moms out there like me who were raising a child or children while being chronically ill.  My blog offers support to those like me, trying to be the best moms they can be while facing challenges which can include chronic pain and fatigue or depression.

Besides writing about chronic illnesses, I  write about women’s issues, daily living, and being a mom in general, you know, your typical mommy blog stuff!  While I want to show well moms what chronically ill moms go through, I also want them to know that we are more alike than different.  As difficult as life can be, I do try to see the humor and fun it can offer, especially when it comes to being a mom.

I speak very openly about my illnesses and how they affect me.  I continue to feel inspired when I receive comments from people such as “You write what I cannot” or “You express exactly how I am feeling, thank you for doing this!”

I hope these posts will give you more of an idea of what my blog is all about:

You Know You Want to Look!

Why I Just Said No to NaBloPoMo

Tuesdays With Tyler:  Halloween!

If you are a first time visitor thanks for stopping by and I do hope you will come again!  And for my loyal readers, thank you for always coming back, you keep me going!

 

 

 

 

 

 

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Tickets Still Available to See Jane Goodall at the State Theatre

Posted on January 6, 2012 by

(I am working with SmartTalk in exchange for the opportunity to see these speakers at no cost to me, and for promotional opportunities for my blog.  I am not being monetarily compensated.)

As a part of the SmartTalk Women Connected Conversation series, tickets are still available to see the world-renowned Dr. Jane Goodall at the State Theatre in New Brunswick, NJ on Monday, January 16th.  Dr. Goodall will not only be speaking about her lifelong work with the Gombe chimpanzees, she will also speak about the current threats to the environment facing our planet and why she believes we have a reason to be optimistic in these complex times.

Tickets are available either by going online to the State Theatre’s website or by calling 732-246-7469.

Hope to see you there!

 

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New Year’s Resolutions???

Posted on January 5, 2012 by

Inspired by Mama Kat’s Writer’s Workshop.

5.  What are your New Year’s Resolutions for 2012 and how did 2011′s resolutions work out?

(Technical Difficulties note:  My blog comments are not coming to me via email.  I hope to resolve this soon but this may result in me not being able to comment back to you.)

I usually don’t make New Year’s Resolutions, I just don’t go in for that type of thing, no offense.  I guess I feel like anytime is the right time to get inspired.

As some one who is chronically ill, I have already had to give up a number of things in my life.  Smoking?  Well I never did that, and most people who are chronically ill have had to give up alcohol because of their medications (which sucks because I really did like a nice glass of wine…or half a bottle).

My weight?  It is ruled by my illnesses.  Last year I gained weight as though I was an aspiring football player trying to get big enough to make the team.  Now I am losing weight because of the depression I am currently in.

There are a lot of things out your control when you are chronically ill.  You are always trying to get as well as you can, that is an ongoing resolution.

But this year I am going to try to make some resolutions that I hope to live by:

1.  To stop thinking that I am the worst mother in the world because I am sick.  That is a vicious cycle that doesn’t do anyone any good.  I know my little boy loves me just because I am his mom and that I try to show to him every day that he means the world to me.

2.  To cut myself some slack, to give myself a break.  I am sick and if I need to stay in bed and read or need extra rest or sleep then I should do it.  I should not feel badly if I need to.  (That is not to say I should wallow in my sicknesses, I need to do what I can to get myself as healthy as I can be)  I just need to recognize when I am feeling under my usual level of crap.

3.  To have a realistic “to do” list for myself.  Perhaps to set the bar low at first and work my way upwards.

4.  To stop worrying about things that are out of my control.  That right now my lawyer is working on appealing my disability decision  and there is nothing I can do about it.  It’s going to take as long as it takes.  To know that I am truly deserving of receiving disability.

5.  To let go and let God.  To have faith that He loves me and hears me.  To realize that He has always taken care of me and that He always will.

6.  To be grateful for the two people in life that love me the most in this world, no matter how sick I am;  my husband and my son.  To recognize that we are each others’ best friends.

If you are one of my regular readers, may you find peace in these resolutions and feel free to take some of mine. If you stopped over from Mama Kat’s, then mostly likely you are a healthy person.  But I think that you too can take something away from what I resolve to do this year. How many resolutions did you make for 2012?   Are they realistic or are they actually too much for you? You are a busy mother, whether you are working outside the home, or staying at home with the kids.  Perhaps you too need to cut yourself some slack and realize that you don’t have to be SUPER MOM.  Look at what you are already doing and now you have resolved to make yourself even BUSIER? Perhaps you might want to lower your bar and resolve to be the very best mother, husband, friend, daughter and professional you can be.  And if you truly feel that you already are, you might want to rethink some of those resolutions.

Here’s to a realistic 2012 for all of us!

(Oh yeah, I can’t have champagne, dammit!)

 

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Please Tell Me I am Not the Only One

Posted on January 2, 2012 by

It is really hard for me to write this, it has been really hard for me to do much of anything. Usually I write to let people know that they are not the only ones suffering from an illness and the problems that result from it, but today I am writing in hopes of your support, for you to tell me that I am not the only one.

In addition to an increase in depression and anxiety that was kicked off by not getting my disability approved, along with holiday stress, for the last week and a half I have been experiencing agoraphobia, which in simple terms is fear of open spaces or public places.  I don’t want to diagnose myself and shouldn’t, but the thought of showering (although I am managing that at least every other day), putting clothes on and going anywhere, driving, is terrifying to me.  And at the root of it all is, “Will I feel well enough?  What if I am somewhere (especially with Tyler) and become exhausted?  I was able to get out once with him this week and took him to an indoor playground and it did go okay but that was the only time I was able to break out of it.  I also believe part of it is that it is winter and I cannot bear the cold.  Putting all those clothes on.  Using the hair dryer, that physical act to dry my hair zaps my energy.

And then the guilt:  what a boring week for my son who has been the best.  I feel like the worst mom in the world.

I think of doctor’s appointments I have coming up, appointments I need to make and I am absolutely terrified about how  I will do it.  I feel like I have been sick for so long, I don’t know how to get out and be a normal human being, someone who can put on nice clothes and look nice or at least decent.  I mourn the loss of the pretty woman I once was.

I am in therapy, I take meds but what do you do when they stop working?  I am at such a crossroads in all areas of my health.  I am probably going to switch to Methadone because I just cannot afford the pain meds that work so well for me.  I am facing going on a new drug for Lupus; Benlysta.  My old one was making me sick by causing to me to pick up infections but I am afraid of the complications of the new one and have been putting it off.

There are lots of areas in my life that are problematic but I cannot shut down like I am doing. Where is my “Do it for Tyler” spirit?

So many people write me and say they find me strong and inspiring but for the past week and a half I am feeling neither.  I cannot find my faith or my optimism.  I don’t feel driven, I just feel afraid and sad.

Please tell me you have been where I am.  If you have any suggestions I am open to them. Or let me know you care and that you are praying for me and thinking about me.  Thank you.

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Happy to See 2011 Go, Especially This Week!

Posted on December 31, 2011 by

Poor Tyler.  He has been home all week for Winter break and what a week it’s been for me healthwise.  He has been great through it all I have to say.

As I have told you, I have been going through a rough time mentally.  At the root of my mental issues, especially for this week, is the fear that I will not be well enough to get out and do things with Tyler.  Christmas Day was a happy one for Tyler, but as per usual I did not feel good enough to play with him and his new toys.  I went back to bed after presents and a few pictures, wondering why my body would not cooperate with my brain, why it just can’t for once let me do what I want to do, even though it really has before, mornings are just really hard for me.  And everyone has this picture in their mind of what the perfect Christmas morning and day is supposed to be like.

We were supposed to go to my aunt’s house at around 3:30 and I was worried about making it through the evening, so I laid down around noon but I was so anxious I could not sleep.  ”I can’t do this!,” I thought to myself and cancelled with my aunt.

And it went downhill from there.  A feeling like I could not not do anything.  I had to call my therapist who said I should treat these feelings as if I had the flu, to rest, hang out in my jammies and to lower my expectations.  To give myself a break.

In the meantime I developed an either wicked bladder infection or urinary tract infection.  I was going to the bathroom every few minutes, especially when I tried to lie down.  I called the Primary Physician on call for this holiday week and his office was good enough to call in antibiotics for me.  I had waited so long, the pain was so bad, were in not for the narcotics I take for my regular health issues I would have had to go to the hospital.

Then extreme nausea and insomnia developed.  How much can I take?, I thought.  I wanted to die but in the way back of my mind knowing that I really didn’t because of Tyler and Grant. Then I realized…I had about a week ago, on my doctor’s orders, doubled one of my medicines for anxiety and depression and these were the side effects!  I was  happy to know that there was at least a reason for some of the things I was experiencing .

These last couple of days I was finally able to get some sleep and I took Tyler to one of those indoor jumping places yesterday.  I was so happy that I could break through the mental and physical pain and have somewhat of a normal day with him.  Tomorrow I want to take him to the mall, assuming it’s open; I need to get him boots or at least have him measured for them. Yes, like most chronically ill moms I am late as usual.

Tonight, Grant, Tyler and I plan to stay up, or at least wake up and watch the Times Square Ball drop and enter into the new year together as a family.  And maybe this is just what we need.  The other day Tyler said, “Mommy, I have parents and a home.  That’s all I really need.”

And when you think about it, that’s all any of us really needs isn’t it?

Wishing you better health, or continued good health, peace, and a better 2012 to all.

Love,

Emily

 

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Tuesdays With Tyler: Christmas in Pictures

Posted on December 27, 2011 by

 

 

 

 

Total amount of stress, preparation, ordering toys:  10 days, 5 hours, 37 minutes

Total time it took to open gifts:  15 minutes

Worth it to see your child’s delight:  Definitely

 

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Tyler and Santa: Through the Years

Posted on December 22, 2011 by

Inspired by Mama Kat’s Writer’s Workshop.

 

Prompt 4) Santa of Christmas past.  Share the previous years Santa photos…what has changed over the years?

Tyler was born September of 2006 and seeing Santa has been hit or miss for us over the years.  Nothing could be cuter than an infant Tyler in Santa’s arms, right?  Wrong, according to Grant!  I never thought Grant would turn out to be the overprotective parent in our relationship.  ”You are not going to give our child over to some old man who might drop him. NO WAY!”

Next Christmas, at 15 months old, Tyler makes it to Santa. As you can see the two got along famously.

 

I think the next year when Tyler was just a little over two, my illnesses were hitting me hard. Grant refuses to wait in line for anything including Santa Claus, so we skipped it that year. That was also the year when Tyler was hit with a horrendous stomach virus and was so sick he didn’t even want to open his presents for almost a week.  Awww.  I am thankful that Tyler was too young to remember anything about that Christmas!

Christmas of 2009 was marred by the H1N1 flu virus, the one which no one was vaccinated for.  Grant’s overprotectiveness kicked in again.  ”Tyler is not going to see Santa!  He’s a germ factory!”  I wondered how we would be able to avoid Santa who seemed to be everywhere.  Sure enough, as I took a three year old Tyler to buy boots he informed me, “Santa’s here.”  ”I know, honey, but we’re here to buy boots.”  I felt terrible.  After getting his boots we had to pass Santa again.  There was no line.  Santa was just sitting there!  I couldn’t stop my son, but as luck would have it he told me he did not want to sit on Santa’s lap, he just wanted to talk to him!  And so they did, man to man.

“What do you want for Christmas?”  ”‘Piderman!”  I translated.  ”Oh and have you been a good boy all year?”  ”Yes”, said a very serious Tyler.  Then Tyler saw the rubber duckies with Santa hats and asked if he could have one, and Santa gave him one.  Then Tyler just said goodbye.

So, with the barest amount of germs exhanged, Tyler got to see Santa that year.

Christmas 2010

 

I am glad I have a blog because I didn’t remember what happened last year until I took a look at my Santa 2010 entry! Last year, Tyler had smartened up and had a long wish list. $50.00 worth of pictures and a Santa frame later we were off to take his holiday portraits at JCPenney.  As we were going along Tyler said, “I forgot to tell Santa I wanted Wolverine and the Six-Armed Spiderman ”  ”It’s okay, honey, Santa is magic, he knows your whole list, he’ll get you those things.”  Tyler became more and more upset.  I couldn’t believe this but I was going to take my child BACK to see Santa!  When it was our turn AGAIN, I explained Tyler’s issue.  So Tyler sat on Santa’s lap AGAIN, and mentioned his last two wishes.  They even shook hands on the deal.

Christmas 2011

 

This year, Tyler was a little nervous, wanting to make sure he looked clean for Santa and for a few seconds he wasn’t sure he wanted to be on Santa’s lap.  But the two connected and Tyler asked for his #1 wish; another Leapster Explorer.  He had thrown his on the floor so many times in frustration that he had finally broken it.  ”I got angry”, he told Santa.  Santa told him that it was okay to be angry once in a while but that he had better be careful once he gets his new computer.

And of course, that new computer will be under the tree for him Christmas Day.

 

 

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A Child’s Goodness to Our Family

Posted on December 21, 2011 by

About a month ago I met with a friend whom I hadn’t seen since college.  We had kept in touch over the years and he works very close to where I live so we went out to lunch.  It was like 20 years had not passed as we fell right into step with each other.  We talked about our children, his 12 year old daughter and his five year old son, who is the same age as Tyler. We talked more about the battle my family has been fighting, Grant and I s’ illnesses, my disability fight, and all of the money problems and worries associated with our situation.  We had a nice time despite the serious talk and I hope it won’t be another 20 years before we see each other again!

On Monday we got what appeared to be a Christmas card from the Holy Trinity Interparochial School in Westfield, NJ.  Puzzled, I opened the card and found $275 worth of gift cards from Target!

It said that my friend’s daughter was one of their students and had given us our name!!

“The children of Holy Trinity want to brighten your Christmas this year.  Please accept our gift…to purchase something useable for you.  Peace, God Bless you, Sister Maureen Fichner.”

I emailed my friend my stunned thanks for giving them our name and he told me that it was his daughter, “Samantha’s”, idea.  They had prayed for our family at home and Samantha was so touched by our family’s struggles that the next day at school she told her teacher and principal that she was starting a fund for us and asked for their help.

Thank you so much, Samantha.  If you are capable of spearheading something like this at twelve, I can only imagine what you will be able to accomplish when you are a grown-up! And for the children and adults connected to the Holy Trinity Interparochial School in Westfield who donated to help us out, you have my heartfelt thanks.   To give to a family whom you have only heard of is amazing.  How nice to know that someone cares about us! All of you represent the true meaning of the season!

May God bless you all and Merry Christmas!

Love, Emily, Tyler and Grant

 

 

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O Christmas Tree: A Family Affair

Posted on December 19, 2011 by

This year between my physical and mental health I could not be the driving force behind getting the tree, putting up the lights, decorating it, etc.  It is probably the latest I have ever done it, but the Christmas tree is up, done!  And my shaggy dog of a child has a haircut!

Instead of coming for Christmas this year, my mother came early because of the overlap of Christmas and Hanukkah. (Long story for another post) It worked out because I really needed help getting things together and keeping things together.  On Saturday by the time we got Tyler’s haircut (always stressful for him and then for me), me having to lift him onto the barber chair, struggling with the cold and winter clothes with the car seat, and then went to lunch, my body aches and exhaustion were telling me I was done for the day.  I am really a one event a day person, if that.

I was very upset, but Grant told me he and Tyler would get the tree, that I shouldn’t worry.  It was a father and son outing and the two were like superheroes, back in a flash with the tree. Tyler had picked it, Grant said.  It was very different from the trees that we usually have, tall and not as full, but beautiful.  It turned out to be the perfect tree because it was easy for me to put up the lights, since it didn’t require as many as a fuller tree would.

Tyler decorates the Christmas tree. Yeah, he's got no pants on. That's how the men in my home roll.

 

Mom decorating the tree, singing Christmas carols. It doesn't get much cheesier, does it?

 

I was too exhausted to decorate the tree this year, but it didn’t matter, the tree was up, for my son.

My contribution, putting up the angel. Tyler was too scared to be lifted up to do it!

 

The finished product.

 

For a close-up of some of my favorite ornaments, check out this post.

So, one big Christmas stress is over and done with!  The next one?  Hoping Tyler’s presents that we have ordered online show up in time!  Will Tyler need an I.O.U. from Santa??

 

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