Tyler’s Troubles

Posted on March 18, 2015 by

I haven’t talked about Tyler in a while, mostly because I’ve been too upset to write about what has been going on with him.

If you don’t already know, Tyler has been diagnosed with Tourette’s Syndrome and OCD. Lately his tics have really been apparent at school and at home. One of the girls who sits by him at school told him to “stop it”. He mostly fits in at school but I worry as he gets older the other kids will notice the tics more and he will be made fun of.

Tyler was also having trouble concentrating in school, having trouble completing his school work, and forgetting to do the routine, simple stuff he’s been asked to do since school started. He’s also been waving his arms and humming and singing. We met with his teacher and some others on his IEP (Individualized Education Program) team and we came up with a behavior chart where Tyler must get a certain amount of plusses throughout the school day and he’ll get a treat. Tyler has been responding wonderfully to it. That makes me feel good because if he had something like ADHD he wouldn’t be able to do the things on the chart.

Lately Tyler has also been having really bad anxiety. Both Grant and I suffer from anxiety too. About two weeks ago he began hearing clicking noise in his ears. I told him I could make my ears “click” too and it was nothing to worry about. But as time wore on he started to really become anxious, to the point of tears. He asked me, “Why are things so hard for me?” He also worried about where you go when you will die and he told me “I worry that if I touch your head it will roll off your shoulder”. I explained to him what anxiety was and we should do some deep breathing to help him calm down but he didn’t want to do it. I told him there was medicine for anxiety and he said, “I want to take it”.

Yesterday we took Tyler to the pediatrician for his ears and the doctor said it was just congestion and she gave us liquid medicine and told Tyler it wasn’t serious. We are hoping now that Tyler knows that he will be less anxious as Grant and I are reluctant to medicate our child for psychiatric problems.

I have a lot of guilt because I transferred my mental illness to Tyler. I can only hope it doesn’t get any worse.

Tyler loves tae kwon do. Here he is with me after just getting his green belt.

Tyler loves tae kwon do. Here he is with me after just getting his green belt.

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Today is Rare Disease Day!

Posted on February 28, 2015 by

The last day of February is Rare Disease Day. There are approximately 7,000 different types of rare diseases with more being discovered every day. 30 million people in the United States are living with a rare disease which is 1 in 10 Americans or 10% of the population. About 50% of the people affected by rare diseases are children.

People with rare diseases face many challenges. Many doctors don’t recognize the symptoms and their patients represent a challenge to the medical community. Because these diseases are so rare there is a lack of financial or market incentives to treat and cure rare diseases.

I met Sarah Liles on one of my Facebook communities. Sarah lives with Eosinophilic Esophagitis (EoE). It is estimated that one in every 2000 people have it. EoE causes Sarah’s body to confuse food proteins for parasites. “My body attacks most foods causing inflammation and damage to the esophagus. Because of this I am on a very limited diet and have to drink a nasty amino acid based medical formula called Neocate to get my daily nutrition. The inflammation from EoE causes me to choke on foods and even liquids, so eating anything is a chore. Because of this, many people with EoE have to get feeding tubes. Along with having trouble swallowing, I also deal with nausea, esophageal spasms, constant sore throats, and fatigue.”

Because of these restrictions, social life can be difficult since many events revolve around food. For Sarah, this can be depressing when this means there will be pizza and a dozen more things she can’t have. Planning for vacations or trips are also difficult because the whole trip becomes about what she can eat, how she’s going to manage to take along what she needs and how to get it cooked.

“People who do not live with an Eosinophilic Disorder have a hard time understanding what the day to day is like. It is exhausting and so much more than ‘just allergies!'”.

Check out rarediseaseday.org to find out how you can get involved!

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Health/Life Update

Posted on February 13, 2015 by

I haven’t written in a while, mostly because I’ve been in a state of limbo with my depression. Nothing has improved with the med change. I saw my psychiatrist yesterday and she increased one of them. In addition to the depression, these last few days I’ve developed an extreme anxiety when I am outside. It is a miserable feeling. We discussed putting me on anxiety medication. I stayed home yesterday and also today and I feel okay in my hideaway. Tomorrow I am supposed to go grocery shopping and we’ll see if the anxiety returns. If so, I will ask my psychiatrist to be put on an anxiety med.

I also talked to the psychiatrist about my failing memory. I don’t remember conversations with people, I often forget what I am talking about in mid-sentence. The doctor said it could be a side effect of the meds or just that I am not using my mind the way I used to. She recommended the website lumosity.com so I joined it and have been “training’ my brain for the past three days. It cost money but I figured it is worth trying to save my brain!

I’ve been sleeping too much, and I’m not sure if that is from depression or narcolepsy or a combination of the two.

I saw my Primary Care Doctor this week and we discussed my latest blood work. My cholesterol is elevated and my fasting blood sugars are increasing. She increased my diabetes medication and said we could give it another six months before trying medication for the cholesterol, while during this period I try to diet and exercise.

But are you really surprised to learn I have not worked out? There are a million good reasons why I should be going to the gym but I am held a prisoner of my mind.

I’m just feeling really down. My house is a mess with a bunch of clean clothes all over the place that I am unable to put away. I don’t have the energy, physically or mentally to clean. Jacques helps but he can’t do everything.

I go to therapy every two weeks and I schedule in chores and workout times in my calendar that I never do. My therapist is often telling me to breathe deep but I don’t even do that. Sometimes I wonder why I bother going.

One nice thing that is happening today is that Jacques and I are having an early Valentine’s Day, since Tyler will be back with us tomorrow night. Jacques is cooking Italian for me. I feel so blessed to have his love, especially when I am going through this.

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Photo credit: escapeandfeelbetter.com

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Depression’s Voice

Posted on January 23, 2015 by

I go for my gym orientation this Monday. After that there will be no more excuses not to work out. But depression is like a voice in my head telling me, “No! I don’t want you to go there! I want you to stay on the couch, not shower and stay in pajamas!” Then there is the, right now, weaker voice telling me “But you have to exercise to get healthy. It will be good for your diabetes and you need to lose weight. It will even help your depression.”

I changed depression medications about a week ago because the one I was on just wasn’t doing the trick. My one medication was replaced by two. I hope and pray it can bring me up to a balance between depression and mania.

My plan, should I be successful, is to just work out once this week, with the goal of going to the gym three times a week, but in my current state my depression brain is telling me how inconvenient it will be for it. Having to shave in the winter, getting out in the cold more than necessary, maybe an extra shower a day when taking one is hard enough, just getting moving.

I know if I can get into the gym a few times I will get into the habit, but it is just such an uphill climb.

Depression for me is like having a little devil on one shoulder wanting to keep me unproductive. And then there is the angel with the smaller voice on the other shoulder telling me that I should get moving, take a shower, and dress.

This is how I would describe depression to someone who has never felt it before, or at least for the long term.

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Photo credit: genius.com

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The Thing I Can’t Change

Posted on January 15, 2015 by

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

Prompt 2. If there was one thing you could change about yourself, what would it be? Why can’t it change?

If I could change anything about myself it would be my mental health. My problems began shortly after I had Tyler and since then I have never been able to get a grip on my brain.

On January 24th, 2012 I attempted suicide. While in the hospital I was diagnosed with Bipolar Disorder. I was hospitalized for two weeks with Intensive Outpatient Therapy to follow. For months I remained depressed with Suicidal Ideation which is fantasizing about suicide.

I had a few months of feeling pretty well when we moved to Ohio and then I started cycling towards Mania. This was right around the time Grant and I split up, December of 2012. I credit my hypomanic state for giving me the courage to leave my marriage, but eventually I went Manic and had to be hospitalized.

Tyler stayed with Grant while I was in the hospital. Being paranoid is part of my mania and I thought Grant would use my mental illness to sue me for custody of Tyler. I felt like I was imprisoned during my hospitalization, I couldn’t wait to get my son back. I didn’t understand that the doctors were trying to make me better. Thank God I had my new boyfriend, Jacques, coming to visit me.

I stayed in the hospital for two weeks and felt better but the medication made me zombie-like and foggy and soon caused me to be depressed. I felt like I was moving through molasses. About a month after being released from the hospital for mania, I went in again for depression. Another two week stay and I was released feeling no better. Tyler was staying with Grant because I didn’t feel functional enough to take care of him.

I started to get better and went back to having partial custody of Tyler. I always felt depressed, although I was able to take care of Tyler. Jacques helped out by doing the cooking and cleaning for me.

This isn’t the post for me to write about what being in a psychiatric hospital is like but I will say that for me, they can be scary places. Rubber rooms, padded cells, straightjackets, shots to calm you down if you are out of control…they have them all, although I have never needed them. Seeing people worse off than you can be scary as well.

My last manic episode was this past May. I had been put on Ritalin in the hopes of clearing up my brain fog and mania is a possible side effect. I got off the drug pretty quickly because I started having symptoms. My paranoia was back and I had a huge fight with Jacques, accusing him of making me sick. One day I felt faint and was having chest pains. I couldn’t breathe so I called 9-1-1. I was alone and scared to death.

When I got to the hospital I had a full-on manic episode. I was hooked up to the heart monitor and I had an auditory hallucination that it had stopped beeping and made the steady sound like I was dead. But I was still moving around. In my delusion I felt that I had died and was a prophet, kind of like Jesus. (Damn, but I am a crazy bitch aren’t I?) Religious delusions are actually quite common in mania. I’m not quite sure what I said in the emergency room, what was real, what was in my head, but I told the doctors and nurses that I had died and death was painless.

I obviously got sent to the hospital. I was still very deluded and so this stay was a peaceful one. I saw signs of Jesus all around me, like in the graffiti. I thought all the patients, doctors and nurses around me were either angels or devils. I was smart enough to keep these thoughts to myself. I stayed in the hospital again for two weeks, but mostly to monitor my physical conditions because I had also been diagnosed with diabetes and asthma.

When I got released, Jacques picked me up and my delusion went away.

Since then I’ve been on the depressed side, not suicidal, not thinking about it in any way but just struggling.

Every time I get out of the hospital I say that this time will be my last but I can’t say that for sure. I don’t know if I will ever feel balanced again. I know that some people can live normal lives with bipolar but that hasn’t been my experience. In the meantime I just take my medicines, go to therapy and hope that there will be a better course of treatment for me.

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Photo credit: anasoriano

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Betty’s Back!

Posted on January 14, 2015 by

On Monday night our cat, Max, scratched at the door as if he wanted to go out. I opened the door and there was Betty, after a week and a half of being missing! She was afraid to go into the house because we have a porch cat that is possessive over the heated A-frame home she lives in. Jacques was able to shoo the tortoiseshell out so that Betty could come in.

Tyler and I were screaming so loudly, Betty didn’t want to come near us!

I don’t know where she’s been all this time but she didn’t look like she had lost any weight and there were no signs of frostbite. I wonder if she had taken refuge at a neighbor’s?

Well Betty’s telling no tales and I hope she doesn’t express a desire to go out until the spring!

She is such an affectionate, sweet cat, I am really happy to have her back!

Thanks to everyone who kept good thoughts about her safe return!

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Missing Betty

Posted on January 9, 2015 by

Last Thursday night my cat, Betty, walked out the door and never came back. Ordinarily she stays indoors during the winter but it was a bit warmer. I saw her last Saturday across the road by my neighbor’s shed. Since then, though, there has been nothing but bitter cold and sub-zero wind chills and snow. My other cat, Max, has come and gone and the cats that I take care of outside have shown up for food but no Betty.

I think I have given up hope, in fact, I don’t even want to think about her wandering around in this weather.

Betty showed up at my house as a kitten and she was feral when I took her in last winter. Slowly she warmed up to us and we were at the point where she would lay in the crook of my arm while I pet her. I lie on the couch a lot because of my depression and she would lie right next to me. Max is a great cat but he is not affectionate the way Betty was.

She also loved the toys that I had for her. I bought her a new one for Christmas and I loved watching her play. Max is not really in to the toys so they just sit here like a horrible reminder.

I am just sick thinking she froze to death out there. I drove around the neighborhood looking to see if she had been hit by a car but I didn’t see anything.

I have to tell Tyler that I don’t believe Betty is ever going to come home, I hate to break his heart. It took Betty the longest to warm up to him because he is so lively but we had finally gotten to the point where she would let him pet her.

I don’t think I’m going to get another cat, even though I think Max is confused and lonely. Vet care is so expensive, I can’t really afford him, especially when he gets older and starts to develop senior health problems. He will be two in May and Betty would have been two around July.

I thought I would have her for a long and happy time.

This isn’t doing much for my depression. I see my psychiatrist this coming week. I haven’t made it to the gym yet but today I am going to call the Y and ask for an orientation on how to work their equipment and I will wear my work-out clothes.

Baby steps.

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New Year’s Resolutions

Posted on December 31, 2014 by

Normally I don’t make New Year’s resolutions with the thought that I’m probably going to break them all within the first few weeks anyway and I am just setting myself up to fail. But this year I’m going to strive for a better 2015.

So here in no particular order are my New Year’s Resolutions:

1. Exercise/Lose Weight

This resolution will be particularly challenging. I am still on the medication that has made me gain the weight and I have been too depressed to go to the gym, even though I have free membership. It’s hard to get off the couch sometimes, much less put on work-out clothes and get there. But I realize that if I can just make it there a few times I can get into a habit and will feel less depressed and in better health. I’ve been pain free for many months now, my tiredness is due to being out of shape, not to any disease.

2. Better Mental Health

Maybe it’s just not possible for me to live a life that is either manic or depressed but I want to try. I’m light years ahead of where I was back in January of 2012 when I attempted suicide but I’ve been struggling with depression for many months. I have an appointment with my psychiatrist next week and I’m going to ask to try a different anti-depressant.

3. Declare Bankruptcy or Debt Consolidation

This has been something that Grant and I have needed to do since we lived in New Jersey but life has been so chaotic we’ve never been able to get our acts together. Things have calmed down and it’s time to do the right thing. I used to have a great credit rating but years of catastrophic illness between a husband and a wife can wreck that fast.

4. Get a Divorce/Dissolution

Yes, I am still married to Grant although we haven’t been together since December of 2012. As you know, our separation has been amicable so we haven’t felt a real rush to make it official, and Jacques has been very easy going about it. It’s lead to some awkward situations though. People in Ohio don’t take kindly to a woman having a husband and a boyfriend.

What are your New Year’s Resolutions?

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Photo credit: http://happynewyear2015greetings.com/happy-new-year-2015-text-messages-and-sms/

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Christmas at Our House 2014

Posted on December 26, 2014 by

We had a very nice day yesterday. Life is far from perfect but I am grateful for so many blessings; a roof over my head, enough food to eat and my unique family that consists of Tyler, Jacques, and Grant. I feel fortunate that Grant and I get along so well that he is able to watch Tyler open up his presents and spend the day with us, and that I have a boyfriend that is okay with it. I am also grateful for our two cats, Max and Betty. I hope you enjoy these pictures of Christmas at our house!

Tyler’s top gifts were a Teenage Mutant Ninja Turtles playset, Zombie Trash Packs and Mutant Mania, a make your own mutant boxing game. Tyler got me a snowman mug with teas and hot chocolate in it, and a candle. Jacques and I don’t do big gifts, we don’t have the budget. I got a high quality can opener that hopefully will work and a beautiful leopard spotted ornament for my all cat ornament Christmas tree. Not on time for Christmas, but he is also getting me a device that will allow me to stream to my t.v.

How was your day?

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Tyler’s Confession

Posted on December 17, 2014 by

Tyler made his Sacrament of Reconciliation, or first confession, this past weekend. I’ve been a really bad Catholic mom, normally not taking him to church. Being depressed, I have a hard time wrapping my mind around getting ready for mass, dressing, hair, makeup, and getting Tyler ready. We usually call Sundays our “lazy Sundays” or “do nothing days” and spend the day in our pajamas.

Tyler has a more difficult time sitting or standing still during the service than other children. Although he has never been classified as hyperactive, he swings his arms around, lays down in the pew, or stands on the kneelers to see better. I have gotten a lot of stares but I know he can’t help it.

When Tyler started the Parish School of Religion (PSR) in first grade I explained to the Head of PSR that while Tyler was in a mainstream class at school he was receiving some special services and that he was subject to tics and wild movements with his arms and was delayed in fine and gross motor skills. She didn’t think it would be a problem, and for first grade and up to now in second grade it hasn’t been.

Although there have been no problems, I’ve always gotten the sense that I was unpopular with the Head of PSR. I’m a separated woman whose husband is Agnostic and I have a boyfriend. We are not the typical Catholic family, that’s for sure.

Anyway, Saturday was the big day when Tyler would make his first confession. He was his usual fidgety self. I tried to calm him down but got little results. Just before the children were going to share their confession with the priest, Tyler told me he had to go to the bathroom. Ahh! He didn’t know where it was so I took him. Suddenly we were approached by the Head of PSR.

“I’ve been watching you!”, she said to Tyler, “And you’ve been doing nothing but fooling around, stop laughing this is a very serious day! And what are you doing up?”

“He has to go to the bathroom!”, I protested.

“Well he should have gone before we started!”

After chastising him some more she left.

“I think she is really cranky”, Tyler said.

“Yes, baby, she is.”

Looking back, I feel I should have defended Tyler better. I’m angry that she yelled at Tyler as if I wasn’t even there. Maybe I felt like a kid myself being yelled at, going back to my own days of Catholic teaching.

Soon Tyler was standing in line for the priest waiting to make his first confession. He was his usual, bouncy self, even making the girl behind him laugh.

Tyler may not be able to stand still but he is always smiling and laughing and his good nature is infectious. I’ll be damned if I’m going to stifle it.

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