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Being A Health Activist is Challenging #A4Amonth

Posted by Connie on Thursday, August 23rd, 2012 at 11:32 pm and is filed under Advocate, Autoimmune Disease.
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Prompt: Leading a community isn’t all sunshine and ice cream – it’s hard. Write a post that delves into 3 challenges that you face as a Health Activist.

Whoa, I don’t lead the Autoimmune Community, but I do advocate for it. And yes, it’s challenging, but so rewarding too. Please don’t take these as complaints. This is a reality check though.

As someone who has five autoimmune diseases (Ulcerative Colitis, Fibromyalgia, Sjogren’s Syndrome, Myasthenia Gravis and Rheumatoid Arthritis), I’m tired a lot of the time and hurting most of the time. I’m used to it and have learned to deal with it. When it comes to being an advocate – talking to someone online or on the phone that has questions or is feeling down, writing blog posts like this one or attending a meeting – there are times that I want to go to bed and zone out. My body is screaming for sleep. I need to do some deep breathing to get a handle on the pain. I am in no way a martyr. There are lots more people who do much more than me, but this is how I feel sometimes. My own needs get in the way and I don’t like it.

I get angry when people refuse to listen to facts. People still believe that because you look good, there’s nothing wrong with you. Listen up! Just because we can get out of bed, get dressed and put a smile on our faces doesn’t mean that our pain level isn’t sky high. No one knows what goes on behind closed doors. It may take hours to get ready and that smile is real, but it can be because we’re finally out around friends and doing something fun, or that smile is plastered on. Then there are people who believe that we did something to deserve being sick. I could go on and on, but I’d rather dwell on those who support us and understand.

It’s easy to feel hopeless when very little in the way of new treatments or dare I say “cure” comes around. When I’m explaining the facts or talking someone down who feels like giving up, that tiny little voice sneaks up and says, “there’s not much to offer them”. Be quiet! There’s so much to offer – beautiful flowers and clouds, hugs from children, the wonder of the written word, the kindness of strangers. Live each day and look for magnificence.

Just like in life, there are good days and bad, good moments and bad, when you advocate for a community.

I’m taking part in the WEGO Health blog carnival. To learn more about the Advocating for Another Blog Carnival visit http://bit.ly/A4Amonth.

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My Dream Day with Chronic Illnesses #HAWMC

Posted by Connie on Saturday, April 14th, 2012 at 8:57 pm and is filed under Uncategorized.
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Prompt: My Dream Day. Describe your ideal day. How would you spend your time? Who would you spend it with? Have you had this day? If not – how could you make it happen?

I have had a number of dream days despite multiple chronic illnesses. Here’s one:

Sitting in the hotel room while my family goes on an adventure without me because the pain is so bad. My choice is to get upset about it, or do something to change it. I think of them together and the fun they are having and instead of jealousy, I’m happy for them. A smile comes to my face. It’s easier now to imagine myself with them. My daughter’s laugh, my husband’s watchful eye, the connections they are making. Soon a few text messages come in that include photos of what they’re doing. They tell me to rest up because we’ll do something special when they get back.

The TV is turned off, the drapes closed and I find a comfortable position to rest. My deep breathing exercises help me get over the waves of pain. I find myself drifting off to sleep. It’s a fitful sleep, so I get some ice and wrap it in a towel. It numbs the pain a bit and I can sleep better.

When they return to the room, they gently wake me. And I’m showered with hugs and kisses. There’s a to go bag filled with some fresh fruit, a cup of soup and a sandwich. My husband opens up a Gatoraide and suggests I drink some mixed with my water. The food is delicious and helps me to feel more alert. As we sit and talk, I find myself laughing again.

Then the question, “Do you want to go out tonight or stay in the room?” I don’t want to ruin their night in case I need to rest again, or can’t cope with the pain. But, they understand so why worry? As they rest, I get in the shower and let the hot water hit those aching muscles. I take it slowly to reserve energy. Sitting and resting after my shower helps, instead of doing my hair and dressing right away.

Some how, I feel a lot better. And the thought of being with my family brightens me up. So I add some Naproxen in my purse, ask my husband to put on some Tiger Balm where I hurt and get on my scooter to go out for a few hours. After seeing the sites and splurging on some goodies, we have dinner. Mine is a salad, my favorite. The taste of the food, the view out of the restaurant window and the joy of coloring the kids menu with my daughter is too much to handle. I might burst from the love and gratitude that I feel.

Please understand, that I know all too well how detrimental pain from fibromyalgia, arthritis, Sjogren’s Syndrome and migraines can be. I don’t make light of it. And there have been periods of time when I could not function because of it. This is a dream day post. Although it has happened to me, it can be because of many factors, including that the pain wasn’t severe, that I recently had a trigger point or Humira injection or that I just darn lucky. I believe in using relaxation and deep breathing to help reduce pain, but I do not look down on anyone who needs more. I do too at times.

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Invisible Illness Week Is Vital

Posted by Connie on Friday, September 11th, 2009 at 11:55 pm and is filed under Advocacy, Chronic Illness, Support Group.
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Invisible Illness Week begins on Monday, September 14th at 9 AM. It’s a virtual conference and the schedule is for the whole week, ending on September 20th. This conference supports those of us who are chronically ill but don’t have outward signs of our illness. There has never been more of an important time, in my opinion to take part in National Invisible Chronic Illness Awareness Week than now. Thank you to Lisa Copen who coordinates this event every year.

Since congress is making a decision on Health Care Reform, let our voices be heard! We are often the ones who pay high prescription costs, get denied Social Security Disability even though we cannot work so we go without insurance, and/or get denied insurance because of pre-existing conditions.

Please watch Marianne Hoynes, who has Sjogren’s Syndrome and Rheumatoid Arthritis as she attempts to speak at a town hall meeting on Health Care Reform:

It was noted that many people could not see that Marianne was not in a wheelchair. So even those of us who have “visible traits” of a sickness are not given the right to speak out on issues that matter to us all.

Visit msnbc.com for Breaking News, World News, and News about the Economy

We all matter.

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30 Things About My Invisible Illness

Posted by Connie on Monday, September 7th, 2009 at 8:56 pm and is filed under Advocacy, Autoimmune Disease, Chronic Illness.
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30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Myasthenia Gravis, Sjogren’s Syndrome, Fibromyalgia, Rheumatoid Arthritis and Ulcerative Colitis.
2. I was diagnosed with it in the year: with UC in 1985, with MG in 2000, the rest 2001 or the year later.
3. But I had symptoms since: 19844 for the UC
4. The biggest adjustment I’ve had to make is: not being able to work and giving up my active lifestlye
5. Most people assume: I’m not sick
6. The hardest part about mornings are: waking up because I’m so tired
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: my laptop
9. The hardest part about nights are: pain and insomnia
10. Each day I take __ pills & vitamins. (No comments, please) 36
11. Regarding alternative treatments I: am not able to try them because of the medications I am on for Myasthenia Gravis. There are many interactions for a certain prescription I take.
12. If I had to choose between an invisible illness or visible I would choose: visible so more people would understand
13. Regarding working and career: I’m sad that I can’t continue working in the career I chose for myself. I’m happy that I can work as a blogger though.
14. People would be surprised to know: that I’m in pain almost all the time.
15. The hardest thing to accept about my new reality has been: that I have to rely on other people for simple things.
16. Something I never thought I could do with my illness that I did was: attend a conference.
17. The commercials about my illness: re: Fibromyalgia and RA – make it seem like a pill or shot cures the disease.
18. Something I really miss doing since I was diagnosed is: dancing, drinking  a few beers, running, walking as much as I want to
19. It was really hard to have to give up: working
20. A new hobby I have taken up since my diagnosis is: blogging and photography
21. If I could have one day of feeling normal again I would: spend it with my family, listening to loud music, dancing, cooking and eating all day long
22. My illness has taught me: to appreciate every moment
23. Want to know a secret? One thing people say that gets under my skin is: you look great!
24. But I love it when people: recognize that most of the things I do take me a lot of effort
25. My favorite motto, scripture, quote that gets me through tough times is: I can do all things through Christ who strengthens me. Philipians 4:13
26. When someone is diagnosed I’d like to tell them: find a doctor who is supportive and knowledgeable and a support system
27. Something that has surprised me about living with an illness is: how understanding my husband and family are
28. The nicest thing someone did for me when I wasn’t feeling well was: take my daughter, who was much younger for play dates so she didn’t have to sit home while I slept
29. I’m involved with Invisible Illness Week because: it’s so important for people to understand about us, what our lives are like, what we go through each day and how they can support us
30. The fact that you read this list makes me feel: fantastic!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

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Dry Eyes

Posted by Connie on Monday, December 1st, 2008 at 12:58 am and is filed under Chronic Illness.
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Sjogren’s Syndrome has been hitting me really bad lately. I guess it has to do with the lack of sleep and a lot of blogging. The computer monitor hurts my eyes a lot. And not sleeping puts me into a flare. Plus not being on Humira has my immune system in havoc.

One thing I know that I need to do is to upgrade the indoor lighting in my home office. That will help my eyes a lot. I need a good desk light and some better lighting over all.

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