Big Day Out?

This weekend I am scheduled to go to a party in a state park thrown by my county’s lost pets’ Facebook page members. They were very helpful to me when Max was missing.

The people in the group are really cool and we all have our love for pets in common. It’s a bring something party that’s supposed to go from noon to four. Jacques is making pasta salad for me to take.

The idea of meeting these people in real life is exciting to me. I’ve lived in Ohio for almost four years and do not have any friends. I haven’t made friends with the mothers of Tyler’s play dates or through his school or extracurricular activities. Having depression and anxiety doesn’t make it any easier. With my weight gain from my meds and my depression I don’t feel good about myself.

And then the anxiety of getting my act together kicks in too. I have to drive a bit of a distance to the park and I have to go alone.

And how will I feel the day of the party? Too physically sick or too afraid to go? Too depressed to get into the shower and get dressed? Will I even make it?

Still, the idea of meeting a whole bunch of people that know next to nothing about me is appealing, and I never have to see them again if I don’t want to. Plus I’ve got an “out” because I’m leaving Tyler with Jacques and I don’t want him to spend hours playing video games. I know if I can actually get there and start talking to people I will be okay. It’s just that it’s been so long since I’ve socialized with anyone, I wonder if I can do it “right”.

How do you deal with social anxiety? Do you go for it or just hide under the covers?

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Religion and the Chronically Ill Parent

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

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

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This picture dates back to a post written in June of 2011, when my son was four and a half years old. We had picked up this book at a library book sale along with a copy of the same children’s bible I had when I was a child.

Back then, due to various illnesses and conditions I had never taken Tyler to church, except for his christening. In the post I wrote about how I would have to somehow find a way to get myself together and start taking him to church, or else how would he learn about his faith?

Fast forward to the present and I have seldom taken Tyler to mass. I’m either too physically ill or mentally cannot get my head together to get there. Tyler does go to religious instruction and has made his First Holy Communion and Penance, but not surprisingly, he HATES when he is taken to mass during the few times he is taken during classes. In fact, he is near terrified of church. Riddled with anxiety and highly sensitive he is scared of the statues and stained glass, thinks the music is sad and can’t stand the smell of the incense which is sometimes burned. He keeps asking the teacher when it will be over.

I know if I was taking him to church he would be used to it by now. Every Sunday I watch mass on the internet but he refuses to watch with me. He also will not pray on a regular basis.

The classes have done him some good, however, as he does believe in God, Jesus, angels and Heaven.

Personally I have made my peace with the fact that God understands that I would go to mass if I could and does not fault me for it. I feel my faith is strong.

But I was raised in the church, went weekly up until I got sick, and sang in the children’s choir and folk group. I believe faith is a strong resource for people in dealing with life’s difficulties.

But is what I am giving my son enough? Will he have these tools as he grows older?

Many chronically ill parents have enormous guilt over not being able to do as much with their children as they like and church is just one of those things.

I just have to hope and pray that the little I can give to my son is enough.

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Results of My Memory Test

Linking up with the Chronic Friday Linkup at Being Fibro Mom and the Weekend Blog Share at Hannah Spannah.

So many of us, whether it be from a disease or medication, experience impaired memory and concentration so I decided a couple of months ago that I needed to know why or where my problems were coming from. So I took a Neuropsychiatric or Neuropsychological test.

The test was about three and a half hours long and included being told a number of words and asking to repeat them, describing words shown to me, and a test on a computer where you had to figure out the changing patterns of cards. I also had to build towers from the largest to the smallest pieces while only moving one piece at a time, which I found the hardest part of the test.

My results said that my cognitive difficulties were most likely due to a combination of my physical and mental conditions along with the medication I was taking for said conditions. There was no evidence of dementia.

My psychiatrist’s recommendation was to minimize the use of my sleeping medication, the sedative that I take for anxiety, and the medication I take for my nausea. The medications that I take for bipolar disorder could also contribute to impaired memory.

So you mean everything I am taking to be a functional human being is playing havoc with my brain???

Suggested strategies for compensating included finding specific locations for important items, task lists, and tracking daily activities in a blog (hey!) or a notebook. I am pretty much already doing these things and still having difficulties.

I really don’t want to fiddle around with or lower my medication dosages so I guess I will have to keep dealing with these impairments with a sense of humor.

How do you deal with physical or mental and medication “brain fog”?

Do you have any funny stories about your memory troubles?

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Book Reviews!

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

These reviews are taken from my goodreads profile. I hope you will follow me on there!

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I read this book as a part of the Rory Gilmore Reading Challenge.

This book centers on two characters, Anna Karenina, who gives up her marriage and son to live life with another man, and Konstantin Levin, who is searching for the meaning of life. Levin is supposed to represent Tolstoy in the book. The plot reads like a soap opera set in Russia in the late 1870’s. The only things that I would say grew tiresome for me is Levin’s life as a farmer and the workings of Russian politics, all of which I skimmed!

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In the 1950s at Johns Hopkins Hospital, an African American woman’s cells were taken without her knowledge. Her cells became legendary because they were the first cells grown in culture, still being grown today and have helped develop the polio vaccine, brought scientists closer to finding cures for cancer, and gene mapping. Yet little was known about the woman behind the “HeLa cells” before Rebecca Skloot’s fascinating book. The writer delves into the lives of Henrietta Lacks and her family and explores issues such as patient consent and experimentation on African Americans. Definitely recommended!

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23 year old Bobby Callahan hires private investigator Kinsey Milhone because he believes someone is trying to kill him after a car accident left him with impaired memory. Kinsey tries to fill in the gaps before someone tries again. I read these books years ago but have forgotten how good they were. This is a great story with plenty of suspense and I look forward to going through the rest of the alphabet!

I hope you enjoyed my reviews. Once again feel free to follow me on goodreads so we can share recommendations!

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Anxiety!!!

Linking up for the Chronic Friday Linkup at Being Fibro Mom.

For the last few months I’ve been experiencing overwhelming anxiety, just in time for my son’s summer vacation. I know I have to take him places and do things with him but I fear going outside.

I feel like I am anxious about everything. An hour or so before I have to go into the shower I start feeling sick (nauseous) and shaky. I take a couple of sedatives but they seem like they take hours to kick in. I can’t eat but I force myself to eat a little.

Between depression and anxiety, showering is an event. Just working up the courage to take off my clothes is an experience. I try to get out of there as quickly as possible and I hate having to shave because it extends my showering time. I don’t feel good after showering, you know, that clean, feel good feeling? I don’t get that any more, I am still shaking after the shower and when I am done I lay on the couch as soon as possible, exhausted.

The next step is putting on my clothes, I am anxious about that but I’m not sure why. I have
this anxiety about what to wear, I guess, or maybe it is one step closer to going out.

I am fearful of getting Tyler ready too. Putting on his clothes, pushing him to brush his teeth. I also get really anxious when I have to bathe him.

I’ve been having Jacques drive Tyler and me places because I am too nervous to drive. It still takes me a while to calm down once I get to my destination, perhaps my sedatives kick in?

I also have anxiety about doing certain things. I let my mail pile up because I just can’t deal with it. When I finally do open it, I’m so spent that I can’t do anything else for the day.

Dealing with and paying bills is even worse. It upsets me to know that I have trouble with doing “adult” things.

The worst thing is, it doesn’t seem to get any better, it’s the same uphill battle every day. Even now, I have over five hours before I have to leave for Tyler’s doctors’ appointments and I am anxious about it. It just gets worse the closer it gets to me having to start to get ready.

Some of the medicine I take for depression is supposed to help anxiety but I am on so much medication that I hesitate to go on something else.

I could do better at non-medication techniques such as breathing or meditating and I do do them but they really don’t seem to work. I’m too anxious to “breathe” and I feel like I can’t.

Are you anxious? What makes it better for you?

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My Son and His OCD

(This post contains strong language and may be upsetting to some. However, it is a true representation of what happened with my son this weekend.)

Tyler has been in therapy and on medication for his OCD for a while now but it only seems to be getting worse.

Lately one of my nine and a half year old’s rituals is to put his hands together and form a triangle and look like he is praying. Then he has to touch something. On Saturday night it was particularly bad. Not only could he not stop the rituals they would not allow him to get up from his chair. It wouldn’t stop.

Suddenly he started saying, “Fuck! Fuck! Fuck! Fuck My Life! Fuck My Life!” I didn’t know what to say, I didn’t know how to help him. Nothing I tried was working. Tyler often gets frustrated with me because I can’t understand what it’s like to have OCD. He’s right, I can’t. One time he told me, “Mom, you just don’t get it”, a phrase that was all too familiar for me in dealing with people and my chronic illnesses.

Tyler kept screaming and he said, “I want to kill myself, I want to kill myself, where are the knives?”

I said, “Tyler, are you serious about wanting to kill yourself? Because if you are I have to take you to the hospital.”

“I am serious!”, he said.

I called Grant, who does have OCD and he said he would be right over but first he was going to go to the pharmacy to get some Benadryl which had been recommended to us by his doctors, which would hopefully make him relaxed and sleepy.

As I waited I thought about what taking him to the hospital would really mean and how damaging it would be for him. I have been in-patient four times and while I did improve my stays were never without some form of damage or scars. I had often heard that the children’s unit was the worse in the hospital, that the kids were “crazy”. It would also mean Tyler staying in the hospital, spending the nights away from us, something that he has never really done. While I knew he could be helped, the visit could trigger some of his other issues.

While we were waiting for Grant he started to calm down on his own and was finally able to break the rituals. When Grant arrived we decided not to give him the Benadryl. As Grant made calls to his doctors, I asked Tyler if he still wanted to kill himself and he told me no. He also said he didn’t really want to kill himself and that he would never do that.

Grant was able to speak to a Child Psychiatrist at an emergency room who told him that it is unlikely for a child Tyler’s age to actually try to kill himself but we should monitor him very carefully over the next couple of days. He also told him that Tyler should be on double the amount of medication he was taking for his OCD for the drug to work effectively.

We see his psychiatrist and therapist on Wednesday.

No one wants to see their child in pain but I have felt mental pain and it is by far worse than physical pain. I worry about what Tyler’s mental health will be like as he ages. He has Tourette’s and has inherited Grant’s OCD and our anxiety. Will he also be bipolar like we are?

When Grant and I decided to have a child we went for genetic testing. We were told our children had a 50% chance of developing some sort of mental illness because of Grant’s mental health issues. My mental health problems started postpartum. While I will never regret the birth of my son I question whether or not Grant and I would have decided to have a baby if both of us were mentally ill.

I think about the teenage years and know they are difficult enough for any child, but what will it be like for one with mental illnesses?

I pray nightly for Tyler’s health and feel that we are doing the best we can with having him be in therapy and on medication but I just feel so sorry that we have brought these conditions on our son.

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The Phrase That Bothers Me the Most!

(This post is part of Chronic Link-up Friday hosted by Being Fibro Mom!)

Most people who are chronically ill have heard something along the lines of “But you don’t look sick?” at LEAST one time in their lives but the phrase that bothers me the most is when I am on the telephone discussing my health conditions with someone and towards the end of the call they say, “Well, you sound good.”

I could be telling them anything. That I’m having a Lupus flare, that I just went on a manic tear, or even that I have been experiencing chronic nausea since September and the doctors can’t figure out why.

Well you Sound Good.

I’m sure you’ve heard it too. To me it sounds like my friends or relatives are trying to brush what I said off or have completely not paid attention to what I have told them.

I know in reality they are just looking to end the conversation on a positive note. I know it can be awkward speaking to chronically ill people who never seem to have any good news to report and they just don’t know WHAT to say to us.

I think what I’d rather hear from them is something like, “Well I think of you often” or “Well your in my thoughts and/or prayers”. Or even just ending the conversation as you would with any well person, “It was good to talk to you.” Most sick people aren’t looking for sympathy or positive spins on our conditions, they just want to be treated like everyone else.

Have you ever heard “Well you sound good?” “What would you rather hear?

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Psychological and Emotional Self-Care

This is a sponsored post from the Self-Care Movement website.

Although I suffer from various conditions such as Lupus, Diabetes and Asthma, by far my hardest battle has been with my mental diagnosis, Bipolar Disorder. This condition causes extreme mood swings, from mania to depression, and I have been hospitalized four times, twice for mania and twice for depression.

For over a year I have been on the depression end of the spectrum. It is hard for me to shower and get out to do the things I need to do. It is hard not to want to sleep or lie in bed all day and I have difficulty with organization, such as opening my mail and keeping my home clean.

I do take medication and see a therapist but that has only taken me so far. It is ultimately up to me to manage my disease. One of the things that I try to do is to take care of my appearance; getting my eyebrows waxed, my hair cut and colored and even the occasional pedicure. These beauty regimens, along with being out, talking to people and having human touch, make me feel pretty and good about myself. One of the symptoms of my depression is that I do not like the way I look and so anything that I can do to improve my appearance lifts my spirits.

Another thing that I have found helpful to self-care is the Health Storyline app created by Self-Care Movement The app is free and can be downloaded via iTunes and Google Play or by signing up on their website.

To be honest, I never thought I needed an app to keep track of my health but Health Storylines has many tools for keeping my disease all in one place. You can customize Health Storylines for your condition and even if they don’t list your condition there are many tools for you to use in the story of you.

One of the categories I find the most helpful is the Medication Tracker. I take a lot of medicines and health supplements and I can input them into the app and it will remind me when to take them and provides a checklist to show that I’ve taken everything I’ve needed to take that day. My disease and the medicines I take wreak havoc on my memory so I definitely need reminders that I can count on!

My mind is in chaos when I have a bunch of ideas or things I need to do rolling around in it so I use the “To Do List”. Seeing what I have to do never fails to give me peace!

I really like the Appointment Calendar which also has a reason for the appointment and a notes section. I usually just handwrite my questions or notes for my doctors, now I have everything I need on my tablet.

The last category that I use in my Health Storylines is the journal. I’ve never been one to journal about my conditions but I realize that putting my thoughts down and then reading several entries gets my feelings out and brings a certain type of tranquility to my mind.

Other categories that I am not using include a Food Diary, an Exercise Diary and a Pain Rating Scale.

Health Storylines has something for anyone with a chronic illness and I definitely recommend you give it a try!

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My Blogaversary!

Inspired by Mama Kat’s Writer’s Workshop. Also part of my first time Friday link-up with Being Fibro Mom!

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

On May 19, 2009 I wrote my very first blog post and seven years later I am still chugging along! I won’t say going strong because some of my illnesses have caused me to stop writing for a period and I’ve lost readership, but I am trying to come back!

A lot has happened in seven years, some obvious, some not so, some things I never thought would happen. Tyler is almost ten years old but will always be my little boy, although I am no longer rocking him to sleep!

Most of the things that I didn’t expect to happen were the bad things. In 2012, I attempted suicide and was diagnosed as having bipolar disorder. I have been hospitalized a total of four times, twice for depression and twice for mania.

Also in 2012, with both of us collecting Social Security Disability Insurance (SSDI), we moved to Ohio, where my husband grew up, because of the lower cost of living.

In December of that same year I left my husband of ten years. He also has bipolar disorder but his episodes at that time included anger and rage. I don’t judge women who stay with abusive husbands but the first time an incident happened I immediately began making plans to leave. I also didn’t want Tyler to grow up in an abusive household.

I never imagined I’d be living in Ohio, I really miss New Jersey, but I own a small home and Tyler is happy here. My ex-husband has come a long way, we both have, to the point where we are friends and we even took Tyler to Disney World together a couple of years ago.

I also am blessed to have a wonderful boyfriend whom I met the day I left Grant!

The mission of my blog has never changed: to write a blog geared towards parents with disabilities and chronic illnesses and to write about the challenges we face raising our children. I hoped I’d be able to break down the prejudices towards disabled and chronically ill people who do not appear to look sick. And I also hoped to show people through my life how to be a better advocate for you and your family’s health, whether you are ill at present or what you need to know should something like this happen to you.

As I said, I don’t have as many readers as I used to but when I get a comment from someone telling me they are going through the same thing, or that I have given someone hope, or even when they give ME advice, it makes it all worthwhile!

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Book Reviews!

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

Prompt 4. Book reviews!

These reviews are taken from my goodreads profile. I hope you will follow me on there!

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No spoiler here, this book starts out with 11 year old Kammie Summers stuck in a well. The rest of the book is taken up with how she got there and explores issues such as peer pressure, the awful reason she moved to Nowheresville, Texas, and adults who don’t always tell you the truth. The book made me feel scared for her and I read it quickly. This book would be classified in the Young Adult genre but don’t let that stop you!

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With a young artist killed on her family’s ranch and one of her relatives suspected, cow-girl and museum curator Benni Harper sets out to find out who the person was that cut down the life of the rising artist. I really enjoy the Benni Harper mystery series. Benni is interesting and likable and so are the storylines and characters, plus it is interesting to see what life is like on a Western California ranch, and there’s even a bit of romance thrown in. I’m looking forward to the next book. I would recommend starting with the beginning of the series, Fool’s Puzzle.

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“I was sitting in a taxi, wondering if I had overdressed for the evening, when I looked out the window and saw Mom rooting through a dumpster.”

That’s how “The Glass Castle”, a memoir by Jeannette Walls starts off and I was immediately hooked. The story goes back to her childhood where her first memory is being three years old cooking hot dogs on the stove and catching on fire. Her parents always believed in children being self-sufficient and when they ran out of rent money or broke a law they would pull up steaks and move to another town. I haven’t finished this book yet but I think I will knock it off in two days, in one night if I didn’t get so sleepy! In my opinion this memoir is not to be missed!

I hope you enjoyed my reviews. Once again feel free to follow me on goodreads so we can share recommendations!

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