When I Was Younger

Inspired by Mama Kat’s Writer’s Workshop.

Prompt 2.) Write something that begins and ends with the words “When I was younger”. (inspired by writingfix.com)

“When I was younger” is a phrase that runs through my mind from time to time.

When I was younger I had lots of boyfriends, life was so exciting!

When I was younger I was always lonely.

When I was younger I was free to stay out late and sleep in on the weekends, I was only responsible for myself.

When I was younger I ached to have a child.

When I was younger I drove a sports car!

When I was younger I got pulled over more.

When I was younger I spent a lot of money on clothes, shoes and make-up.

When I was younger I bought a lot of things that I didn’t need.

Even though I am chronically ill now and I have less money,  I realize that I am happier and I wouldn’t go back to the way things were, when I was younger.

This is my first Writer’s Workshop and second blog post after an extended period of illness.

 

 

 

 

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Dropping Back Into Life

Let me start off by saying how sorry I am to have made you worry.  I received so many emails, tweets and comments on my blog from concerned readers.  After eight months, I finally feel ready to talk again.

It takes a lot of things to make a person drop out of life for so long.

Back in January I became dangerously depressed.  Being turned down for disability in December, along with non-stop pain and dry mouth from my meds and another diagnosis, this one requiring a procedure, fighting for food stamps, again…I felt like I just couldn’t do it any more.  Blog-wise, not realizing that this was part of my depression, I felt uninspired.  The ideas had always flowed so freely and now there didn’t seem to be anything to write about, or I would run out of things to say and the posts would stay in the “drafts” section.  I would stare at the weekly writing prompts on Mama Kat’s and nothing would appeal to me, I just couldn’t relate to any of the suggested topics.

I was at times depressed to the point of near catatonia.  I also felt as thought I had Alzheimer’s.  I couldn’t remember how to shop for groceries or how to cook.

I also became agoraphobic and had much difficulty leaving the house.

I felt like I could not take care of Tyler.

Everyone around me, including my therapist, thought I needed a break.  That I was too stressed out from everything going on and would benefit from having a kind of vacation in my home.

My mother-in-law flew in to help me, to be followed by my mother, but I just got worse.

I began thinking that Tyler deserved a better mother.  He was only five, he would forget me, and be better off without me.  Any mother would be better than me.

I decided to go in-patient and while this may work for many people it did not work for me.  The therapy was not helping and neither were the new drugs.  I realized some people had been in the hospital for weeks and even months, and I knew if I did not show improvement they would not let me go.  I took the advice of a patient who had been “inside” many times and I said what I had to say to get out.  I went straight into out-patient three days a week and found no help there either.  I asked for a change of meds as it had now been six weeks and I was not improving.

Throughout Tyler’s life, Grant and I had been able to take care of Tyler.  When one was very ill the other would pick up the slack.

For the first time, we both found ourselves very sick.

We had no family in the area and had to make a quick and hard decision.

Grant and I split up.  There was no room for all three of us at my mother’s or Grant’s parents’ house, so Tyler came to live with me at my mother and stepfather’s in Massachusetts and Grant went to live with his parents in Ohio.

I realize now how wrong this was, that we should have done anything we could have to keep our family together, but at the time I could see no other way.

We do plan on reuniting with all three of us living on our own in OH.  The cost of living is much cheaper and we would be near Grant’s parents.

Tyler has not adjusted well and he remains brokenhearted about being away from Grant.  I am hoping he does a little better when he starts school on Wednesday but nothing will take the place of his daddy or the three of us being together again.

When I got here in March, I became even worse.  I could not even begin to get help.

I sunk even lower into  my depression and I began having delusions.  I also became very disengaged and did not feel love for my son.  I would look at other mothers and wonder why I couldn’t love my child the way they could.  What had happened to Super Mommy? I had to force myself to say I love you, show him affection, read to him, etc.

I have researched Lupus and Mental Illness, and found such diagnoses as Lupus Psychosis and Lupus With CNS Involvement could be the cause of my symptoms.  I need to see a Neurologist.  It has been such a long time since I have taken care of myself.

Tyler and I went to OH to visit Grant in mid/early August and after that I finally started to come out of my depression.  I felt more hopeful and I finally sought therapy and medication.

Disability-wise, an upper court found fault with my judge’s decision and my case is going to be reconsidered on October 5th, most likely by the same horrific judge.  I have lost nearly everything due to being sick, perhaps this will finally be enough for her.

Getting my disability would go a long way in getting us all back together sooner.

I hope to start writing again on a regular basis and I again thank you for your concerns and your loyalty to Mama Sick.  I hope you can understand that I just could not respond and did not even communicate with most of my IRL family and friends, and still have not with most of them.

I never imagined one could get that depressed.

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The Day After SITS: Thank You!

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!

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

(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???

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

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!

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

 

 

 

 

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

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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