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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

My Very Own Health Tag Line #HAWMC

Posted by Connie on Thursday, April 26th, 2012 at 12:42 pm and is filed under Chronic Illness.
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Prompt: Health tagline. Give yourself, your blog, your condition, or some aspect of your health a tagline. Make sure it’s catchy!

I’ve mentioned this before in other posts, so those of you who read my blog regularly won’t be surprised by the tagline I chose for myself….WBS – Weird Body Symptoms.

If it’s not in a medical book, or doesn’t fit with a disease, I get it. If it takes at least 3 medical tests to figure out what it is, I’ve had it. And if a doctor gets scared when I’m  coming into her office, it’s my kind of normal.

If I had any talent with drawing, WBS would look like a hunched over person, with warts, flaking skin and dripping sweat, holding a barf bag and sitting in a scooter. Total exaggeration, but that’s what’s needed in this situation.

Watch out for WBS! She’s on the move, coming to a city near you!

Third Person Health Story Post #HAWMC

Posted by Connie on Wednesday, April 25th, 2012 at 11:17 am and is filed under Blogging, Chronic Illness.
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Prompt: Third person post. Write about a memory you have but describe it using the third person. Use as many sensory images (sights, sounds, textures, etc.) as you can. Don’t use “I” or “me” unless you include dialogue.

The nurse was preoccupied with beeping monitors, tangled IV tubings and deciphering labs. The unshaven husband was by the patient’s bedside. He’d sit down for a few minutes then suddenly feel the need to move around, to break free of his fear. Up out of his seat, he’d walk around the room, looking at the same framed picture of an idyllic lake scene, switching the TV channels and stretch his aching back. He would refrain  from asking the nurse when she expected his wife to wake up again, although that’s all he could think about.

Not the type to scare easily, he was startled when the noise of the commentator’s voice came on the TV that there was breaking news. “Now what?” he muttered under his breath. Shortly, the nurse came to look at what was going on.

A scene of New York City, with crowds of people in the streets appeared on the screen. It was easy to be afraid without a word being said. The sight was all too familiar. The voices from the TV blurted that there was an extensive blackout with no known cause. The husband finally spoke to the nurse in a questioning voice, “Terrorists. That’s all we need now.” She patted him on the arm. “We’re safe.”

A movement from the bed was heard. First an arm moved, and then the patient’s eyes were opening and shutting. The nurse spoke quietly, “You can keep your eyes closed if it’s more comfortable. Your husband is here and you’re doing just fine.”

“I can’t see! Why is it so dark?” More squirming and tugging on the IV, not intended to do harm, but there was a loss of understanding. Fear was overwhelming the patient. The husband caressed her face, told her the surgery was done. She was fine. Slowly the fidgeting ceased.

A few hours passed and the patient attempted to speak, but it sounded like she was drunk, all slurred and sloppy. The nurse explained that the anesthesia and the pain medicine were making it difficult to talk. The patient tried to open her eyes again and when she did, everything was a blur. She began to cry. It was just her and the nurse and no matter what the nurse said, she couldn’t stop crying.

The patient was thinking that she had this surgery to clear up her double vision, to help her keep her eyes open, to help make her speech clearer. And it didn’t work.

Side note: This is the story of the day I had my thymus removed in a surgery called a thymectomy. It is done to help reduce symptoms of Myasthenia Gravis. I did end up speaking much better and my droopy eye and double vision improved greatly. I spent about 10 days in the hospital. Full recovery took about 3 months.

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Hercules the Mascot of Myasthenia Gravis #HAWMC

Posted by Connie on Tuesday, April 24th, 2012 at 9:30 am and is filed under Blogging, Chronic Illness.
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Prompt: Health Mascot. Give yourself, your condition, or your health focus a mascot. Is it a real person? Fictional? Mythical being? Describe them. Bonus points if you provide a visual!

HerculesMy choice for the mascot for Myasthenia Gravis is Hercules.

  1. Weakness is one of the main symptoms in Myasthenia Gravis (MG). Hercules has amazing strength.
  2. Those of us who have MG are often called snowflakes. Our symptoms vary a great deal. Hercules was both god and mortal – very unique.
  3. It can take a long time to diagnose Myasthenia Gravis. Hercules didn’t learn about his strength until he was a man.
  4. This disease does its best to do us in. Some of us have trachs, some have been in crises, and some of have trouble swallowing our food. Hercules’ mother tried to kill him, even when he was a baby, but he survived.
  5. Those of us with MG feel left out. Our disease is often unknown, even to doctors. We may look alright, but our bodies are weak. Hercules lived with a mortal family, but didn’t feel that he fit in. He was too strong and hurt others, even his own family.
  6. We have difficulties every day. Some can be as minor as our eyelid drooping, or our arms are too weak to brush our hair. Sometimes my head feels too heavy and I have to lean it back on my chair or lie down. We find ways to deal with what MG has given us. Hercules was given 12 tasks to complete (the 12 labors of Hercules) to gain his freedom. It took him 12 years to do, but he finished them.
  7. Those of us with Myasthenia Gravis are stubborn. We are amazing, loving people who want to help others who are given the same diagnosis. We cry along with them and wipe away their tears. We rejoice when they are out of crisis and a treatment is working. Hercules was given the ultimate gift for work. He was made immortal and went to live with the gods when done with his life on earth.

Image source: http://disney-clipart.com/Hercules/

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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Health Notes to Remember #HAWMC

Posted by Connie on Sunday, April 22nd, 2012 at 3:57 pm and is filed under Advocate, Chronic Illness.
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Prompt: The Things We Forget. Visit http://thingsweforget.blogspot.com/ and make your own version of a short memo reminder. Where would you post it?

Health Notes to Remember to Share with the Public:

Invisible Disablilities

I’d post this on my car when I park in a handicap spot.

Live Life to the Fullest

This needs to be in doctors’ offices and hospitals.

Chronically Ill appearance

I wrote this quote years ago. I’d post it everywhere.

Health Notes to Remember for Myself: These can work as affirmations. I’d stick them on my bathroom mirror.

Sing, hum, listen

Just keep swimming

Share your notes with me so we can encourage each other.

 

 

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