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Best Conversation Ever #HAWMC

Posted by Connie on Sunday, April 8th, 2012 at 9:11 pm and is filed under Chronic Illness, Family Life.
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Prompt: Best conversation I had this week. Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week.

Reminder: My daughter, Sammi who is 12 years was possibly diagnosed with Long QT Syndrome. She’s a borderline case, but we will get a firm diagnosis this summer.

sammi_cruising

Conversation between myself and my husband, Shawn….

Me: I really want Sammi to spend a few weeks with her sister in Kansas this summer.

Shawn: We need to get her to the Mayo Clinic or Shands Hospital this summer to find out if she has it.

Me: She has the whole summer off. There’s plenty of time for her to go to Kansas.

Shawn: I know, but that’s the most important thing we need to do.

Me: I agree, but it shouldn’t interfere with her having fun.

No reply….

Me: Shawn, we have to let Sammi live a regular life. Sheltering her isn’t go to do anyone good.  She really needs to spend time away from us! I’m afraid that we’re only hurting her now and for her future.

We discussed how our daughter is spending more time alone at home, without a social life. Vacations are always together as a family and she’s never with a babysitter. Even if she does have Long QT Syndrome, she’s going to live on her own one day, hopefully by the time she goes to college. Preparing her needs to start now.

It’s hard not be overprotective when your child has a serious illness. Even though she doesn’t have the “real” diagnosis, she cannot take a very long list of medications, including antibiotics. A cold can keep her out of school so it doesn’t get worse. But, just like me she’s going to have to live her life to the fullest. It needs to start now.

 

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A Letter To My 18 Year Old Self #HAWMC

Posted by Connie on Thursday, November 3rd, 2011 at 10:36 pm and is filed under Chronic Illness, Family Life.
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Dear 18 Year Old Connie,

You live such an amazing life, even though you think time doesn’t move quickly enough. You want to be older so you can do more things – live on your own, travel, get married, and earn more money. You hate the way you look because you’re so thin. You feel lonely because you don’t have a relationship. But these thoughts and feelings are kept inside, told to no one. So you put on a happy face, go out until all hours of the night, drink too much, do drugs and try to hide your feelings. You’re known as the party girl – the one who takes hours to get dressed and put makeup on, goes out at 11 PM and doesn’t come home until 6 AM. You live for the weekends, school vacations and the summer.

You’ve been lucky that you’re alive with some of the choices you’ve made. Thinking that nothing can harm you is a childish way to think. It’s a shame that you won’t learn that for a long time. Did you ever consider alcohol poisoning, AIDS, rape, or death could be a consequence of your actions? You’ll be grateful that you don’t have an addictive personality, or your life would be changed forever.

People can’t believe the amount of food that you eat and you still don’t gain a pound. And this is so easy to get used to. Who needs to exercise when you’re so skinny? And that’s a habit to fall into also. It’s understandable that you wanted to gain weight, but eating healthy foods instead of junk food would create better eating habits later in life. Just because you didn’t need to exercise, didn’t mean you should become lazy. You loved to run, roller skate, ride your bike because you felt energized. It gave you a high, but I guess the drinking and drugs took the place of that high. In just a few years, you’d wish you had energy for any of that activity.

The good thing is that you loved people and hated to see others hurt. Soon, you’re going to learn that you deserve love and don’t deserve to be treated badly by anyone. It may take the love of your child to recognize that, but that’s what life will put before you. Then you’ll learn to open up about how truly unhappy and afraid you are. Again, it will be for your child’s sake, but soon it will be for your own too. Your friendships and the love of your family will help you get through some difficult times, both emotionally and physically. And you’ll be surprised. The light will dawn on you though, through soul-searching work, tears, anger and fear.

That strength will help you through health problems that may have caused others to give up. Instead, you’ll grieve and move on. Reaching for the love of those around you. Leaning when it’s necessary. Being bold and courageous when it’s possible. Then, helping others for the right reasons.

This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Keeping Elderly Mom Safe At Home

Posted by Connie on Wednesday, September 8th, 2010 at 11:02 pm and is filed under Cancer, Family Life.
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My mom is elderly and has some health problems, but has fallen a few times. I want to keep her safe in her own home, where she wants to live, but I’ve been concerned to say the least. Her health issues are mainly age-related, but she was diagnosed with breast cancer last year. She’s doing very well, thank goodness.

She had minor surgery, finished radiation therapy and is on a cancer medication for 5 years. This drug has a lot of side effects including hot flashes and fatigue. Of course, she must remain on it. She also has breathing problems due to Emphysema and Asthma. When she gets anxious or upset, she gets short of breath quickly. The next thing that happens is that she becomes dizzy. When she’s fallen before that has been the cause.

The most recent time, she was outside without her portable phone. I’ve told her so many times to keep that with her! She was calling for help for about an hour in the hot sun until her next door neighbor heard her. Thanks to her, she helped my mom get up, brought her into the house and called me. Although she wasn’t seriously hurt, she was very frightened. This incident caused her to keep her phone with her, but I took it upon myself to get in touch with a medical alarm button company to be sure she was safe all of the time.  When her device arrived, she agreed to use it. I’m so thankful that she is complying so she can live alone and be safe at home.

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Preparing For The Future

Posted by Connie on Monday, May 24th, 2010 at 11:07 pm and is filed under Chronic Illness, Family Life.
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There’s so much going on with my health as usual, that I’ve been preparing for the future. There’s good mixed in with the bad though. My daughter Alicia just got her Master’s Degree. My daughter Sammi is going to start middle school. My mother recently finished treatment for breast cancer. My husband got his own route at work, but was just in a car accident and hurt his neck along with his back problems that he already has.

Of course it’s better to focus on the good, but it’s important to prepare for the future too, even if it isn’t pleasant. I have a good example to look to – my parents. They prepared for their passing with a will and burial plans. My mother and father both bought Funeral Insurance.  When my Dad passed 14 years ago, all of his plans were made. It was a difficult time, but not having to worry about where he was to be buried and how to pay for it, made it easier.

Life Insurance is something that concerns my husband and me.  When my husband was in the military we both had Life Insurance, but we let the plans lapse when my husband was medically retired. Since I have chronic illnesses, it is too expensive for me to get Life Insurance.  We do need to consider it though, as it would be costly to replace me!  In reality it is. I take care of our daughter Sammi while my husband works and do other household chores as I’m able.  It’s time for us to start getting Life Insurance Quotes to see if we can afford it vs. what it would be like without it and something happens to me.  Maybe that will get my husband to recognize how valuable I am!

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The Great Outdoors With Chronic Illness

Posted by Connie on Friday, March 5th, 2010 at 12:18 am and is filed under Chronic Illness, Family Life, Food.
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Although I like the great outdoors, having chronic illnesses, makes it unsafe for me to go too far from home, especially where I have no access to a cell phone. Plus, if I’m too far and I need immediate medical care, that’s another reason to feel unsafe.

My best bet to enjoy the outdoors is to be in nature but close to help. A beach is good pick for me, a lake that has access to a main road or a resort that has an area that is just far enough to be quiet and peaceful, but not too far to be unsafe. When I’m in a flare, I’m usually at home in my backyard. We have birdhouses, some trees and a fenced in yard.

I love when my husband grills and we sit at a picnic table to eat. The only problem is that we have a gas grill where it isn’t easy to make smores because we really can’t roast marshmallows. I’ve been bugging my husband to get a firepit so that I can sit outside, relax, feel comfy and eat wieners and smores. It gives me a good feeling to be in the great, be it fake, outdoors.

Stress Can Affect Breathing

Posted by Connie on Monday, July 20th, 2009 at 11:57 pm and is filed under Chronic Illness, Family Life, Health Information.
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My mother was told by three doctors that her difficulty breathing is related to stress. She has had numerous tests done and everything comes back normal, except for some signs of asthma. The asthma is not serious and she is on inhalers. But what was noticed during tests was that as she got anxious, her breathing, blood pressure and heart rate went up.

She does have a medical condition, asthma. She is very stressed due to taking care of her sister who is in a nursing home and she does suffer from anxiety. I am not saying that being short of breath is only due to stress, but it does make it worse.

She is almost 80 and won’t agree to seeing a psychiatrist or even a therapist. She’s been this way all of her life, she says. So I try my best to help her the best I can. It is difficult when you know what is best for a close family member but they won’t agree to it.

I’m sure that many of you have been in this position. What have you done to cope or to help?

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