In a HEAP of Trouble

Last November I applied for Ohio’s HEAP (Home Energy Assistance Program). I called three weeks or so later to find out the status but was told it could take up to 12 weeks to hear back! That made it February. When I called them they told me they did not have an application for me, that I wasn’t in their system! All of the documents they called for that I worked so hard on getting were somehow lost…where? In their system? In the mail?

They suggested I make an in-person appointment as those applications are seen more quickly. I had my appointment with a counselor who said I probably had too much income to qualify. Tyler collects Social Security because of my disability and I said that his father took money from the account too, but she said it was based on income flowing in. She wanted to see what I paid for in insurance premiums for Tyler’s health and dental insurance. After hours spent on the phone trying to get from the insurance companies what I wanted, I went back with the information needed to complete my application.

I heard back quickly, I was not qualified because I made too much money. If you take out what I pay for in doctor’s visits and in medications I would have qualified but they don’t take out for that.

I was really upset. Jacques said I shouldn’t be upset because I never had the program in the first place, and he also said he would help out if needed and Grant wouldn’t let Tyler and I freeze.

The whole thing threw me for a loop depression-wise and I had a bad couple of days. Like so many people who get turned down for food stamps or SNAP (Supplementary Nutritional Assistant Program), I feel like I have fallen through the cracks. I worry the whole month until I get my disability money direct deposited on the 3rd of every month. I almost feel like it would be better to have a little less income in order to qualify for these types of programs.

Thankfully, there is not much cause for heat this time of the year.

I’ll try to save a little money by going to the food bank and for meals at various churches. Tyler gets free lunch from school so that does help out.

Have you ever felt like you have fallen through the cracks?

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Getting a Break and Other Stuff

I’m not sure if it’s the longer days, adding another medicine or making a change in my diet, but my depression is improving! The first day I felt better I cleaned my bathroom and I cleaned the cat box. I finally put away the clean laundry. I am showering and getting out more and I am sleeping less. My next goal is to clear the kitchen table so we can actually eat on it! I am still depressed, I wouldn’t call myself “normal” or as I like to call it balanced, but it a definite improvement!

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Tyler is making his First Holy Communion in May and on Sunday it was “Jesus Day” from 9:30 to 2:00 where the kids attend a mass and then do an activity. Parents, relatives and Godparents are supposed to share by letters their First Communion memories, but all of my relatives are back east and Tyler doesn’t even remember them or his Godparents. Jacques is Catholic but he doesn’t remember his first communion, and the only thing I remember about it was loving my pretty white dress and excited to finally taste the communion wafers!

I had a hard time getting Tyler to go to Jesus Day. There are many things about the church that scare him including the big Jesus on the cross over the altar and the pictures in the stained glass windows. I tried to tell him that Jesus loves him and would never hurt him. I’m kind of out of ideas to relieve his anxiousness about the church and am open to suggestions!

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One day a month Jacques and I eat a meal at our local Presbyterian church. We also eat a meal every Wednesday at the Methodist church to save us a little bit of money. I am always worried that we will never have enough. My SSDI/disability gets us by but we have little in the way of savings. At the Presbyterian church as I parked my car I saw a mother and her two children parking their bicycles. What did they do during the winter? Did they need to skip meals? I was struck by how grateful to God I was and how I take what I DO have for granted. I own my car and home and we never go hungry. I need to trust that when I need money I will have it.

Hope you all are as well as can be!

Emily

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Isolation

I moved to Ohio almost two and a half years ago and have yet to find a girlfriend. I have Jacques to love and support me and even Grant but I miss getting together with my girlfriends. My three best friends are out of state. I consider the people I meet online friends, some of them I’ve talked to on the phone and even some who have lent me money, but I long for a friend whom I could go out and get coffee with. I’ve tried to make friends with some of Tyler’s friends’ mothers but that hasn’t seemed to work out, in fact they never ask us for a play date again and I blame myself that I’ve done or said something wrong

Of course a large part of this is due to being depressed and mentally ill. It’s hard to put myself out there. I have a perception of myself that people can tell I am mentally ill, that they can see it in my appearance or my clothes, and I am also ashamed and unconfident because of my weight.

If I were to find a friend, do I tell her about my mental illness? What do I tell her when she asks what do I do for work?

There is a part of me that says I don’t need any friends, that I should just concentrate on being the best mom I can be to Tyler and it doesn’t matter if I have girlfriends. That I should be more concerned about whether or not he has friends, that my good times are over.

It’s possible I can meet friends through my church but mentally I cannot get it together to go to church and I would suppose these women are regular church goers.

Do you find yourself isolated by your illness?

Do you have any ideas on how I could make friends?

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On Track?

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

Writer's Workshop

Prompt #3 Update your readers on your 2015 goals. How are things going? Are you staying on track or facing some challenges?

I wrote my New Year’s Resolutions on December 31st. Let’s see how I’m doing.

1. Exercise/Lose Weight: Unfortunately, not much happening here. I’ve been dieting by having smaller portions and cutting sugar from my diet but my weight seems to be unchanged. I haven’t been able to go to the gym. I think part of it is that I am embarrassed that I might be the heaviest person there. But the weather’s getting better and I think I am going to like walking. My son Tyler has low muscle tone and his therapist said walking will make him stronger, so it’s a nice thing we could do together. My boyfriend, Jacques, is also on board with walking.

2. Better Mental Health: I am finally getting a break in my long-term depression! Suddenly I’m caring about how the house looks, showering every day and opening my mail every day. (That’s a big deal for some mentally ill people.)

3. Declare Bankruptcy or Debt Consolidation: Grant and I saw a lawyer earlier this week about declaring bankruptcy. My husband, whom I am separated from, and I both suffered catastrophic illnesses a few years back. While awaiting our disability we were forced to live off our credit cards and blow through our savings. The lawyer told us that my 2010 car was still worth enough for creditors to take so he suggested waiting a year to declare bankruptcy, when my car will further depreciate. That’s another year of mail and daily calls from creditors I guess I will just have to deal with.

4. Get a Divorce or Dissolution: The lawyer recommended we stay married so we don’t pay double the bankruptcy fees so that’s something I can’t cross off this year. Luckily Grant and I are amicable so it’s not that much of a big deal.

So that’s how I’m doing, how are you doing with your New Year’s resolutions or goals?

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The Awful Truth

A couple of weeks ago eight and a half year old Tyler asked me if the Tooth Fairy was real. After much stalling and deliberation I decided to tell him the truth and he was okay with it. He didn’t ask me about the Easter Bunny or Santa Claus and I was relieved.

But this weekend he asked me if the Easter Bunny was real and I decided to tell him the truth. “You’re the Easter Bunny?!”, he asked incredulously. And then, “Is Santa Claus real?” and I told him that yes, Santa Claus was real. At first he said okay but then after a minute of deliberation he asked, “Is Santa Claus really real, mom?” I hesitated and he said, “If he’s not real, I’ll be okay with it”, shrugging his shoulders. I looked at him and it was like I flash-forwarded to him as a teenager. It was just the way he looked and the way he said it. He was so mature. I told him that Santa wasn’t real either. “You mean you’re Santa???!!!” At first he looked sad. I told him that Santa Claus was based on Saint Nicholas and that we could read about it if he was interested but he wasn’t.

Later he asked me, “Was Santa Claus alive when you were a kid, did you get presents from Santa?”, and I told him that Saint Nicholas lived hundreds of years ago.

I think I was more upset about telling him Santa and the Easter Bunny weren’t real than he was; that loss of innocence. Of course, now that he knows that I am the Easter Bunny he told me the toys and candy he wanted for Easter and it sounded like a Christmas list!

Most of the magic of Easter and Christmas is gone for Tyler now, never to be the same, but I’m glad he was grown up enough to take it alright.

Does your child still think the Easter Bunny and Santa Claus are real?

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Right Click Paste!

Writer's Workshop

Prompt: 2. Open a blank blog post and “right click paste” in the body of the post…what was pasted? Explain it.

Spoon Theory mentioned on MTV! http://www.mamasick.com/2015/03/the-spoon-theory-gets-a-mention-on-mtv/ … #SpooniesThankMTV

I am really happy that this was my last cut and paste because it gives me a chance to write about a subject that is meaningful to me and one that Mama Kat’s fans can learn about as well!

Earlier this week “The Spoon Theory” and Christine Miserandino were mentioned on MTV. Christine is the author of “The Spoon Theory and developed the website butyoudontlooksick.com This was BIG news!

As a person having invisible illnesses; diabetes, asthma and bipolar disease among them, the questions “But you don’t look sick?” or “How does it feel to be chronically ill?” came up often for me, even from some of my doctors until my diagnoses were made. I lost a lot of family and friends who just didn’t understand.

Then someone referred me to Christine’s website and her “Spoon Theory”. The theory is based on a true story developed by Christine when her best friend asked her what it was like to be sick. Basically it says that we all start our day with a certain number of spoons, but sick people use up their spoons more quickly than well people. For example, it might take a healthy person half a spoon to take a shower, but it may take a sick person three spoons. Many of us refer to ourselves as “Spoonies”.

“The Spoon Theory” has been read by thousands and seen throughout the world. The But You Don’t Look Sick’s ? Facebook page has over 130,000 likes on it.

If you know of someone with a chronic illness, or you have one, I encourage you to read “The Spoon Theory” and see Christine’s But You Don’t Look Sick’s website.

Personally “The Spoon Theory” helped saved my life and I owe Christine big time because of it! I’ve known her for over 14 years and I am pleased to say I knew her when she had a tiny blog with a little story!

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The “Spoon Theory” Gets a Mention on MTV!

I’ve known Christine Miserandino via on line for over 10 years and her Spoon Theory and her But You Don’t Look Sick web site has helped save my life.

I’m celebrating today with Christine because her name and The Spoon Theory were mentioned on MTV news!

Special thanks also goes out to Deepa Lakshmin who wrote the story about people living with chronic illness.

Basically the Spoon Theory is a way to show healthy people what being sick is like. We are all given a certain number of “spoons” per day and while a healthy person may use 1 spoon to take a shower, it may take away three spoons from those suffering from chronic illness.

Christine and her Spoon Theory has grown so much that people identify themselves as “Spoonies” and I proudly count myself as being one of them.

Thanks again to MTV for spreading the word and congratulations to Christine!

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Tyler’s Troubles

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!

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

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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