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Challenges and Victories of Being Chronically Ill

Posted by Connie on Friday, April 27th, 2012 at 9:26 am and is filed under Chronic Illness, Healthy or Not, Loving Life.
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Prompt: 5 Challenges. 5 Small Victories. Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

Challenge

Five Challenges of Being Chronically Ill

  1. I can’t be there physically for my daughters like I want to be. Even though we’ve been to counseling as a family and individually, I still get twinges of guilt when I’m unable to attend a school function, or take care of my daughter when she’s sick.
  2. Because of the multiple chronic illnesses and the side effects of the medications that I take, I’m unable to work. Before the diagnosis of Myasthenia Gravis, I had one full time job and two part time jobs. I love working! It was part of how I defined myself.
  3. Not knowing if a simple cold will land me in the hospital. I fear sickness and can go overboard with the slightest inkling that I might have a virus or cold. My doctors would say otherwise. They would tell you that I’m noncompliant because I don’t call or make an appointment right away.
  4. It’s awful having to take a lot of prescribed pills every day. I’m not really sure why this bothers me so much, but sometimes I get to the point where I purposely forget to take a bunch.
  5. I miss a lot of things I could do before I got sick. Most of them are physical, like dancing (didn’t matter what I looked like dancing, I’d dance for hours), running, skipping, walking for a long time (indoors and outdoors), sitting in the sun (even with sunscreen on, that’s a no-no), going to the beach for the day (I can last a few hours sometimes if there’s shade and I can get in the water), and just picking up and going out. It’s harder for me to retain things that I learn. I’m scattered and forgetful.

Victory

Five Victories of Being Chronically Ill

  1. My empathy has grown a great deal, even for strangers who are suffering or going through a difficult time. Having chronic pain, going through a difficult surgery and being sick so much has opened my heart to others.
  2. I’ve learned the importance of listening and not giving advice. When others do that for me, it’s one of the best gifts I can get.
  3. Forgiveness is easier. I don’t hold grudges like I used to. Life is too short. It’s easier to be on good terms with someone than to feel hatred towards them. I’d rather use my energy for positive things
  4. I take better care of my health by eating healthy foods, by moving around as much as I can (my exercise is stretching and walking around the house), and by using relaxation and deep breathing. I want to live as long as I can and not get any other illnesses that can be prevented.
  5. Saying I love you is simple and something I do every day. I want to be sure that my family and friends know how much they mean to me. I cherish them.

Image source for stone steps – http://www.sxc.hu/photo/1249882
Image source for winning runner – http://www.sxc.hu/photo/1241543

Give Me Your Best Diagnosis #HAWMC

Posted by Connie on Monday, April 23rd, 2012 at 10:04 am and is filed under Advocate, Healthy or Not.
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Prompt: Health Activist Choice Day 2! Write about whatever you like.

Have you had a doctor tell you, “I don’t know”? It’s refreshing to hear that, especially when he says that he’s going to continue to find an answer, a diagnosis and a treatment. I’d much rather hear that than be given some farfetched diagnosis that I and my doctor both know is ridiculous.

This happened to me recently and it’s happening more frequently. I understand that you need to fill in the blank on insurance paperwork for a diagnosis, but don’t give me some baloney story. It makes me feel like I’m too stupid to realize that you just don’t know.

My health issues are so complex and I’m always coming up with WBS – Weird Body Symptoms – that I wouldn’t blame any doctor who was bewildered with a pain that I’m complaining about, or nausea. With me and probably with others who have multiple chronic illnesses, it’s going to take time to separate one condition from another first. Then making the decision through tests, blood work, etc. will be needed to determine if it’s something entirely new.

Doctors, it’s OK to admit that you don’t have an answer. Be reassuring that you’re not giving up. Work with me and let’s get to work on getting a real diagnosis.

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Look in the Mirror #HAWMC

Posted by Connie on Thursday, April 12th, 2012 at 5:54 pm and is filed under Chronic Illness, Healthy or Not.
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Prompt: Stream of Consciousness Day. Start with the sentence “This morning I looked in the mirror…” just write, don’t stop, don’t edit. Post!

This morning I looked in the mirror and saw a tired face, with messy hair and too pale skin. It was the hangover appearance of the day before, which was spent in bed with a fever and stomach ache. The fear was clearly in my eyes as I was scheduled for tests to determine if I had Hydronephrosis of my right kidney again and a UTI.

When it feels like things are going well, something happens to create chaos – a new symptom, a repeat of an old one. No more kidney stones! Not another stent! Soon I realize that there are other doctors I was supposed to see and haven’t even made appointments, tests that need to be done, B12 shots that were missed. It begins to feel overwhelming.

I catch myself before it gets worse. Look into that mirror and give myself a pep talk. I feel better than I did yesterday. The doctor is taking quick action so if it’s an infection, I’m already on an antibiotic. As soon as I get home, it’s time to make appointments. My support system is in full swing. Now get your butt into gear and go for those tests! Put a smile on your face and you’ll feel better.

And I do. And another day will bring along these same issues. Some days will be worse than others, some much better. But, I’ll always “do”.

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Dear 16 Year Old Me #HAWMC

Posted by Connie on Tuesday, April 10th, 2012 at 10:47 pm and is filed under Healthy or Not.
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Prompt: Dear 16-year-old-me. Write a letter to yourself at age 16. What would you tell yourself? What would you make your younger self aware of?

Background info: At the early age of 16, I had already started drinking alcohol and smoking marijuana. I believe I began experimenting with other drugs later that year too. And my dating life was in full swing. Panic attacks would rarely hit, but when they did they were bad enough to make me feel faint and unable to be around others.

Survival Secret

Dear 16 Year Old Me,

Your beauty is unfolding, but you still believe that you look hideous. Your family life is in constant turmoil and  instead of talking about it, you cover those feelings by getting drunk or high. Your refuge is going out on the weekends and going to school (as much you tell everyone you hate it). Able to eat anything and not gain an ounce, you cry wishing you looked normal instead of thin. The teasing by girls and even worse by boys is incessant and you take every jeer to heart.

Look around at those friends who love you, who stick up for you. Those are people who care about you. When your parents fight, it isn’t your fault. Don’t take the blame. Learn to accept them for who they are: incapable of giving affection, but loving parents with issues of their own. If it gets to be too much to handle, talk to your favorite teacher. She would listen and get you help.

When you feel that fear creeping in, don’t stifle your feelings. Let your mother know. She understands because she has anxiety too and so does your younger sister. It’s nothing to be ashamed of.

Eat and enjoy it! Think of what those bullies will look like just 5 or 10 years from now. While you’ll stay thin for a long time and have curves in the right places. They’ll be wishing they could be like you when the pounds start adding on.

Live in the moment, naturally. You never know what the future will bring and that lesson will come in very handy one day.

And most of all, love yourself. You are funny, smart, a good friend, a loving daughter and sister, and pretty.

Weight Loss Isn’t Easy

Posted by Connie on Thursday, May 12th, 2011 at 6:27 pm and is filed under Chronic Illness, Food, Healthy or Not.
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I’ve learned the hard way that weight loss isn’t easy especially when you’re limited in your ability to exercise due to chronic illnesses. Although I’ve cut down on my calorie intake and walked, not being able to exercise on a constant basis makes it even more difficult to lose those extra pounds and inches.

A weight loss plan includes burning more calories than you consume and and some type of  physical activity in your daily routine. A good friend of mine who has Fibromyalgia, has been successful in losing weight. First, she saw her doctor to talk about her goals and got a check up. Next she included her rheumatologist in her effort. He was able to provide information on the kind of exercise that would be beneficial to her, especially physical activity that wouldn’t cause more pain.

Walking for Weight Loss

Image by o5com via Flickr

Her exercise routine began with yoga and stretching. She learned to listen to her body. If she felt pain, she slowed down, massaged the area or stopped if need be. Next came walking. Being outdoors helped her to feel more positive. She saw people and said hello to them. Soon they became walking buddies.

Shortly after her walking increased, she joined a gym that her rheumatologist recommended. The trainers were familiar with Fibromayalgia and exercises that helped lessen pain and help with weight loss. Soon, she was doing more cardiovascular exercises. She alternated days with water aerobics.

She chose to follow common sense with her diet. She read about calories, fat, sodium and decided to eat more fruits and vegetables along with more fish and poultry. She included protein supplements to improve her metabolism and help regulate her appetite. As she changed her diet, she found it more appealing, finding different fruits she had never eaten before. Instead of potato chips, she ate carrot sticks with a small amount of low fat salad dressing. It seemed as if her taste buds were changing!

Within one month, my friend lost 10 pounds. She does not look at this as a diet or exercise program, but as a lifestyle change. She’s an inspiration to many!

This is a sponsored post. All opinions are my own.

June – Myasthenia Gravis Awareness Month

Posted by Connie on Saturday, June 26th, 2010 at 1:12 am and is filed under Chronic Illness, DisABILITY Advocate, Health Information, Healthy or Not.
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June is almost over, but there’s still enough time to write my yearly post about Myasthenia Gravis Awareness Month. I’ve been living with MG for 7 years now. In the beginning it was so difficult that I really thought I would die. I can remember waking up at night being short of breath and thinking this would be my last moment on earth. In terror, I would hyperventilate making it worse.

That stopped thankfully and then I began to feel like my throat was closing up. At first my throat would feel numb. I don’t know how else to describe it. Then I’d feel like the opening in my throat was getting smaller. I’d be awake for hours afraid to close my eyes because I thought wouldn’t wake up.

This isn’t how the Myasthenia Gravis started. At first I felt like I couldn’t keep my right eye opened. No one could see it, but I felt it. It was annoying. Then I felt like I couldn’t move my body, like it was a dead weight. I was so tired. I remember standing in line to pick up my daughter from preschool when I was sure I would just fall right down there and sleep. I took all my might, my control to stay upright, to be able to move and talk. And then drive home.

I’d lie on the floor next to my daughter at home because I knew I’d fall asleep. At least I was close by her and would hear if something happened…I’d hope and pray.

Finally I went to the neurologist and he saw my eye drooping. It was the beginning of learning to live with this neuro-muscular disease, this chronic illness, that I take heavy duty prescription medications for, that I’ve had surgery that cracked open my breastbone, that allowed me to realize how blessed I am, how so many other people are worse off than I am and that made me the person I am today.

To learn about the symptoms of, the treatments for and the ways to cope with Myasthenia Gravis, visit the Myasthenia Gravis Association.

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