30 Things About My Invisible Illness You May Not Know

Posted on October 2, 2015 by

Welcome to all who are seeing this blog for the first time coming over from the Invisible Illness Awareness Week website! My blog seeks to let sick moms know that they are not alone, as well as educate healthy people about those of us with chronic, invisible illnesses.

Besides answering this year’s topic “What Are You Fighting For?“, the website is also doing a “30 Things About My Invisible Illness You May Not Know” meme.

So here I go:

30 Things About My Invisible Illness You May Not Know:

1. The illness I live with is: I’ve been diagnosed with many such as Lupus, Rheumatoid Arthritis and Diabetes but I am currently fighting bipolar disorder and more specifically, bipolar depression.

2. I was diagnosed with it in the year: 2012, after my suicide attempt.

3. But I had symptoms since: 2011

4. The biggest adjustment I’ve had to make is: Learning to deal with hospitalization for my mental health.

5. Most people assume: That I am crazy and sometimes I think they are right!

6. The hardest part about mornings are: I am on disability so I don’t work. I also suffer from Hypersomnia so I take a pill in the morning to help me get up. Depending on how depressed I am mornings are not too bad for me. I drive my son to school.

7. My favorite medical TV show is: Don’t watch ’em!

8. A gadget I couldn’t live without is: Google Maps, the app!

9. The hardest part about nights are: Actually, the nights are the easiest because I am mentally drained from the day. I also take something to help me sleep. I thank God I’ve made it to bedtime every night!

10. Each day I take 15 pills & vitamins and up to 20 if I’m having a bad day with anxiety. (No comments, please)

11. Regarding alternative treatments I: really don’t believe in them, personally. I honestly feel I need medication.

12. If I had to choose between an invisible illness or visible I would choose: I would still choose an invisible illness so I could protect my privacy.

13. Regarding working and career: I no longer work, I am on disability. I had a good career and was doing well but when I was diagnosed with Lupus I could no longer go on working. I miss it; pretty work clothes, dealing with people, and knowing that I am not able to give my son the opportunities he deserves because I cannot work.

14. People would be surprised to know: That my worst delusion ever was when I thought I was a prophet, ranking right under Jesus Christ in importance!

15. The hardest thing to accept about my new reality has been: That I can’t be the mom that I dreamed I would be.

16. Something I never thought I could do with my illness that I did was: Having chronic illnesses made me feel like I had something to share and so I began to blog.

17. The commercials about my illness: I don’t see any for bipolar, just depression.

18. Something I really miss doing since I was diagnosed is: Being able to go somewhere fun with my son without it being so hard.

19. It was really hard to have to give up: My sanity!

20. A new hobby I have taken up since my diagnosis is: As I mentioned, blogging.

21. If I could have one day of feeling normal again I would: Take my son to the beach or to a fair without feeling like I am forcing myself to go.

22. My illness has taught me: That there are so many out there like me and that so many people have it worse than I do.

23. Want to know a secret? One thing people say that gets under my skin is: When I am depressed, when people say that I should just let myself be happy.

24. But I love it when people: When I meet someone and I am comfortable enough to share that I have bipolar disorder and they have a story about them, a relative or a friend who has mental illness as well. It is important to get a dialog going.

25. My favorite motto, scripture, quote that gets me through tough times is: I’m not sure where this is from but it talks about Eeyore from Winnie the Pooh: “One awesome thing about Eeyore is that even though he is basically clinically depressed, he still gets invited to participate in adventures and shenanigans with all of his friends And they never expect him to pretend to feel happy, they just love him anyway, and they never leave him behind or ask him to change.”

26. When someone is diagnosed I’d like to tell them: That there is help and hope and that medical science is researching for the answers, and that we’ve come so far already.

27. Something that has surprised me about living with an illness is: You realize who your true friends and family are.

28. The nicest thing someone did for me when I wasn’t feeling well was: My friend and her husband cleaned my house, another friend made a big meal for my family.

29. I’m involved with Invisible Illness Week because: I think it is a great way to educate well people about people with chronic, invisible diseases.

30. The fact that you read this list makes me feel: that you are truly interested in learning how to accept people with mental illness.

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What Am I Fighting For?

Posted on September 28, 2015 by

Welcome to all who are seeing this blog for the first time coming over from the Invisible Illness Awareness Week website! My blog seeks to let sick moms know that they are not alone, as well as educate healthy people about those of us with chronic, invisible illnesses.

The topic this year is “What is your invisible fight?”

I suffer from a number of chronic illnesses, but of late my toughest battle has been against bipolar disorder.

There have been some times in my life that I have indeed wondered what am I fighting for, the lowest point being my suicide attempt in 2012, when I was diagnosed with bipolar disorder. At the time I was convinced that due to my illnesses I was of no value to my son and that he was better off without me, that he would do better and have more opportunities with another mother.

I am currently experiencing a long state of bipolar depression although nowhere near as bad as when I attempted suicide. I am fighting for my son and I realize now that although I am sick, my son is a gift from God and I was meant to be his mother. I try every day to be the best parent I can be to him.

I fight against my disease by being in therapy and taking a lot of medication, mood stabilizers and medication for depression. It’s a lot of pills every day and there are a lot of side effects which include weight gain, drowsiness and loss of sexual desire. Some people decide that the side effects are not worth it and they choose not to take the medicine, but I know that I need to be on them, if only for my son.

I battle bipolar disease everyday, but I must, because my son needs his mother.

What is your invisible fight?

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For My Son on His 9th Birthday

Posted on September 12, 2015 by

If you would like to look back on some other birthday messages here is Tyler’s 8th birthday.

Where did the year go? You’ve waited months, weeks and days and now your birthday is finally here! You got up early to open up your presents as if it were Christmas! You got the Spider-Man villains Carnage and Anti-Venom and the “anti-superhero” Dead Pool. I’ve never heard of these guys but I like learning about them with you. You are going to be Dead Pool for Halloween and I am afraid no one is going to know who you are!

You celebrated your birthday in school yesterday with candy and cupcakes. Your birthday party is tomorrow. Just you and three boys for laser tag and cupcakes. I am nervous because I want everything to be perfect.

Your anxiety and OCD have gotten worse and your father and I are trying to make the decision whether or not to medicate you, which is probably the most difficult decision we’ve ever had to make for you. I hate to see you suffer and feel guilty that your dad and I have passed our mental illnesses to you.

You are in the third grade and hate school which scares me a little because I want you to go to college and your dad and I probably aren’t going to be able to help, although we do have a college fund for you.

I have a lot of long range worries for you besides college. The dentist says you will need braces in a few years and I don’t know how much insurance pays for that. I worry that you won’t have a car to drive when you are ready to drive, I worry that I won’t have a car at all.

You know we are not rich, but don’t know how bad our financial situation is and I dread me having to tell you someday. Our house is a mess and I worry it will bother you when you get older, but for now it’s the home you love.

This year I told you about my depression and you took it very well, but I worry about having to explain to you my bipolar disorder and I hope I don’t have to for a while.

You’ve been in Tae Kwan Do for over a year and are doing well in it. Your dad and I are so proud of you!

Your father and I have not discussed sex with you yet even though we plan to soon. I wonder how that will go over!

You are my favorite person in the world and I try to tell you that often.

It’s 11:40 a.m. and nine years ago I was in heavy labor. You are the best thing that has ever happened to me and I try so hard to be the mother that you deserve.

So happy birthday my beautiful boy. You are smart, funny and courageous and the perfect son for me!

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To Medicate or Not Medicate My Son

Posted on September 8, 2015 by

Last week Grant saw the nurse practioner at Tyler’s psychiatric practice. I was home sick with a virus. Due to Tyler’s OCD and Anxiety he recommended that Tyler be placed on Zoloft.

Grant and I have been agonizing over this decision. We always said we would medicate Tyler when his problems interfered with academia and they are starting to, as Tyler has “bad thoughts” while in school and can’t pay attention.

But we worry about the side effects Zoloft can have in children. They are mostly the normal side effects you would expect, including nausea, weight loss or weight gain, sleepiness or insomnia, and headache. But in addition, Zolof has a black box warning side effect that like in many antidepressants, can cause suicidal thoughts or behaviors in adults under 25. The percentage of suicidal thoughts is small but the chance for a child to have them increases if their is a family history of suicidal thoughts, and both Grant and I have had past suicide attempts.

When the nurse practioner heard that, he was a bit less likely to put Tyler on Zoloft and suggested Vistaril, a sedative to be given as needed. I like that option even less than the Zoloft because I feel it sends a message that everything can be fixed with a pill. Is that going to make him more likely to try illegal drugs when he is older?

But research shows that antidepressants in conjunction with Cognitive Behavioral Therapy provides the best, quickest outcome. And I hate to watch my little boy suffer.

We will most likely get a second opinion, but I just wish there was a firm answer.

Any advice is appreciated!

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Disinterest

Posted on August 31, 2015 by

My depression has been increasing of late, although not at all to the point of suicidal thoughts. Add to that anxiety with a little agoraphobia thrown in and it makes for one useless human being.

I’m okay when Tyler is home, I can manage to take him out, but when he’s with Grant I stay home under the covers with showering being optional. I read or watch Netflix or I sleep. My house is a mess but I can’t get up the motivation to get off the couch or bed. I know I should be exercising and I hate the way my body looks but I just can’t get moving. As soon as I am done with this blog I am spending the rest of the day in bed until Tyler comes home from school. He doesn’t care if I look a mess or not but I know someday he will.

Whenever I get really depressed my blog suffers because I have absolutely no inspiration. I’m scarce on social media too, not being able to see the smiling faces of my friends and family on Facebook. I’m not interested in reading other people’s blogs, even though I may learn something. And I’ve pinned so many depression and chronic illness pins my feed looks like one big funeral.

I’ve been having some money problems so I’ve had to put off going to the psychiatrist and therapist, although I am taking my medication. My meds are obviously not working but I’m afraid to try something new because of the side effects. Or maybe this is the best it gets for me? I’m grateful I’m not manic so I suppose depression is better? Is it too much to hope for a balance?

Whenever I go to my therapist all she tells me to do is breathe. Breathing is the answer for everything. I’m tired of breathing, I just want to be better.

So that’s where I’m at right now. I know when I don’t post I lose readership, another depressing thought.

So for now I’m just hanging out, hoping for better days ahead but scared the best is behind me.

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Throwback Thursday: School Days

Posted on August 20, 2015 by

This post inspired by Mama Kat’s Writer’s Workshop.

Prompt #1 Throwback Thursday: Choose a photo from a previous August and write a poem or a blog post.

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This picture is from August 2011, back when we still lived in New Jersey and school began after Labor Day rather than in August here in the midwest.

Tyler had graduated from pre-school and we had enrolled him in some “kindergarten
preparedness” camps. In traditional daycare fashion, I stuffed a change of clothes, sunblock, hand sanitizer and some other stuff I can’t remember now, along with the required snack and water in the backpack and the back pack was too heavy for Tyler to manage. I had to thin it out.

On the first day I was able to come into the classroom and set things up in his cubby. On the second day I was not even able to come into the room! “We’ve got him now, Mrs. Cullen, he’ll be okay, he knows where his cubby is. We’ll see you later.”

When I picked him up on the second day they had formed a sort of roll call. The moms or other caregivers had to line up at exactly 12:00 and two by two they called the kids. Olivia? Tyler? Come and get your stuff, your moms are here to pick you up.

I looked in and saw all the children seated in a square, sitting as perfectly still as Stepford children. How did they do that?

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The years have passed by all too quickly and yesterday Tyler had his first day of third grade! Before school started I asked him if he wanted to find his classroom so he would know on the first day of school but Tyler said he’d figure it out.

My son is becoming more independent every day. Your heart aches a little but at the same time you are so proud, you know?

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A Semicolon is a Pause, Not an Ending

Posted on August 10, 2015 by

When I first read about Project Semicolon I really liked it’s mission. President Amy Bleuel started Project Semicolon in 2013, ten years after her father committed suicide.

“Project Semicolon means continuance”, Amy says. “In literature a author uses a semicolon when they chose not to end a sentence. You are the author and the sentence is your life. You are choosing to continue.”

The project has encouraged many affected by mental illness to get semicolon tattoos and post them to social media with the hashtags #projectsemicolon and #semicolonproject.

“Project Semicolon strives to love and encourage others with hope to continue their stories,” Amy goes on. “Despite the struggles one faces we are here to encourage continuance through love.”

Among the organization’s Visions “is that together we can achieve lower suicide rates in the US and around the world” and “together we can start a conversation about suicide, mental illness and addiction that can’t be stopped” and that “we envision love and hope and we declare that hope is alive”.

If you would like to be a part of Project Semicolon go to the website’s “Get Involved” page.

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Photo courtesy of dolly.com.

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The Worst Boss

Posted on July 30, 2015 by

Inspired by Mama Kat’s Writer’s Workshop.

Writer's Workshop

Prompt #2: Write a post where the first and last sentence contain any form of the word “boss.”

I will never again make the same mistake I did at my last job; not interviewing with my direct boss. I was interviewed by the owner of the recruitment company and one of the managers. I had the knowledge and expertise they were looking for so they gave me a good offer. I was really excited to work there.

On the first day I met my boss and she didn’t like me as soon as she saw me. “Carrie” was a very jealous person. She and I had just had babies and I had dropped the weight like that, plus more, and Carrie was still carrying hers. I could just hear her seething when one of my new co-workers would welcome me and say, “You just had a baby? You look amazing!”

Of course she was to train me, but there were things I knew that she didn’t know and I could tell she didn’t like it. She did her best to discourage me any way she could. I was suffering from postpartum anxiety and every time she called me in for a private meeting I had to pop a Klonopin.

After training, I worked from home until we leased an office nearer to me and she would make me keep a record of all of the phone calls I made every day to make sure that I was doing enough work. It drove her crazy that she could only manage me from a distance!

I was very successful in what I did, but as soon as I would master something new, she’d change what I was recruiting for, making me start all over again. But I viewed myself as a floater and it was interesting to learn new areas of industry.

Finally she gave me the project to end all projects. Recruit an engineer to a small company in Portland, Maine. As in Maine, with the worst winters? I had to promote Portland in the summer time and how hip and happening it was to try to interest someone.

A few days into the project I got a call from the owner of the company (this was the husband, it was run by a husband and wife). “I hear you’re one of my best recruiters”, he said and I thanked him.

Soon, Carrie put another person on the project. I had to train him in what the person did, the research I was doing and how great Maine was. Looking back I was so naive; I was training my replacement!

About a week later Carrie called me in for a meeting. She said they had lost a big client, which was true, and she had to lay me off, since I was one of the newer employees. I had never been fired/laid off in my life! I considered calling the owner to tell him that his manager had just fired one of his best recruiters but that would have only made things worse with Carrie.

Working for this boss was like being in high school all over again!

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Update on My Son’s Health

Posted on July 28, 2015 by

Grant and I have decided to switch therapists for Tyler. We had gotten as far as we could with this therapist and have now opted for a psychologist who specializes in OCD, phobias and Tourette’s Syndrome. The doctor practices Cognitive Behavioral Therapy which has been shown to be an effective treatment for the issues Tyler has. Grant and I saw the doctor alone for a history on Tyler and then Tyler met the doctor too. His first real session starts next week.

Tyler has another diagnosis that he’s had for a while that I just haven’t written about. It was something I’ve never heard of before. It’s called Primary Motor Stereotypy . Tyler is classified as having Complex Motor Stereotypy and his symptoms include hand and arm flapping, wiggling his fingers in front of his face and finger wiggling. The movements often appear or increase in frequency when a child is stressed, fatigued, anxious, excited or engrossed in an activity.

There is no real treatment for Stereotypies and the type Tyler has usually lasts for life.

We are less than a month away from school and I really worry about Tyler being teased or bullied, whether it’s the stereotypy, the OCD or the tics. The older he gets the more noticeable these things will become as children are expected to sit still during class. In his second grade class last year the only thing that happened was that Tyler was humming and the girl sitting next to him told him to stop it.

Tyler is taking tae kwon do, so hopefully he won’t have to be a victim of bullying.

Every night I pray I have the mental and physical health to parent and support Tyler the way he needs. We think we have found him a good therapist and for now that’s the best we can do.

Tyler's idea of a perfect summer; the pool and video games!

Tyler’s idea of a perfect summer; the pool and video games!

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Contest: Win the Book “How to Be Sick”!

Posted on July 16, 2015 by

Recently I read the excellent book, “How to Be Sick, a Buddist-Inspired Guide for the Chronically Ill and Their Caregivers” by Toni Bernhard. Previously a law professor for 22 years, Toni got sick in 2001 with what doctors termed an acute viral infection, which she never recovered from.

When I read “How to Be Sick” I felt that it was finally a book that offered me constructive ways of coming to terms with my illnesses and limitations! Toni Bernhard’s book is Buddhist-inspired but she makes it very readable for the lay-person. Some of her chapters include “Staying Sick: This Can’t Be Happening to Me”, “Getting Off the Wheel of Suffering” and “Healing the Mind by Living in the Present Moment”. I borrowed this book from the library but this book is one of the very few ones I bought as a reference. It’s an excellent book for those who are chronically ill who are ready to come to terms with their life!

And now, you can win a copy of “How to Be Sick” from Mama Sick! The contest will run until Wednesday, July 22nd at 11:59 p.m. and there are three ways to win:

1. Leave a comment.

2. Tweet out this contest and let me know you have done so by entering again and saying something like, “I tweeted out this contest”.

3. Put this contest on your Facebook page and let me know you have done so by entering again and saying something like, “I put this contest on my Facebook”.

Therefore, if you do all three, you will have three separate entries in my contest!

Good luck!

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Congratulations Ruth Thomas, you are the winner of Toni Bernhard’s “How to Be Sick”! Please contact me by email at emilyandtylercullen@gmail.com or @mamasick on Twitter. I hope you enjoy this terrific reference!

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