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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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Dental Hygieniest Dumps Me

Posted by Connie on Monday, May 25th, 2009 at 11:25 pm and is filed under Uncategorized.
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It’s been three good years with me and my dental hygienist. We had a good thing going. I would see her every three months like clockwork. I brush two to three times a day, floss every day and if I have any problems in between my scheduled visits, I call or go in. When you have Sjogren’s Syndrome, you have to take care of your teeth or you can lose them.

I missed my appointment because I was sick. Same thing happened with my re-scheduled one. Now we are on appointment number 5. When I called to re-schedule, it happened. She didn’t even have the nerve to tell me herself. She’s ending it. If I lived in Texas, I’d be looking for a Plano Dentist, but I’ll have to take a new hygienist instead.

Day Trip Coming Up

Posted by Connie on Saturday, February 21st, 2009 at 11:22 pm and is filed under Uncategorized.
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I’m planning on meeting a blogger friend who is vacationing at Disney. We decided to meet at her hotel and do lunch. When we made these plans I was feeling well and didn’t think I’d have any problems. I figured I’d need to rest before driving home, but I could sit at DownTown Disney on a bench or even take a nap in my car. But with the way I’ve been feeling, I’ve asked my Mom to go with me.

This has me thinking and worrying too. What will I do if I’m not well for my daughter’s wedding? I will be there any way I can but I want to be able to enjoy myself. It’s so awful knowing that there is a good chance that I might feel sickly.

suitcaseI worry about making travel plans for the same reason. If we did have to cancel, I’d be so disappointed and know I’d let my family down. The one thing I learned is to always buy travel insurance just in case and to be sure that it pre-existing conditions.

Myasthenia Gravis Video is Awesome

Posted by Connie on Tuesday, February 10th, 2009 at 10:25 pm and is filed under Uncategorized.
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I came across this video from my Google Alert set to Myasthenia Gravis. I am amazed at the the way that this young man who is only 13 is able to describe what MG is all about. Lewis Schofield, who also has Asperger Syndrome, a form of Autism, was diagnosed with MG in April of 2008. He was most likely 12. With his ability to make this video to educate people about this disease and to inspire people at the same time, I bet that there are offers for marketing jobs coming his way.

I admire him. Plus he makes me really think that I need to be grateful for what I have. How can I complain after seeing what he is going through?

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Finding Specialty Health Care In A Rural Area

Posted by Connie on Thursday, November 6th, 2008 at 12:11 am and is filed under Uncategorized.
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Although I live in a rural area that has three hospitals and more doctor offices than you can count, is mainly populated by senior citizens and tons of surgery centers, finding specialty health care here is often very difficult.

If fact for me finding a neurologist that knows how to treat Myasthenia Gravis correctly was impossible. I have to travel over an hour to my neurologist. I’m fortunate that he is used to working with patients who live out of town and is willing to communicate with my doctors and if need be emergency room doctors here.

But, this can take a toll on me as a patient, especially when I am having a flare up. I need to have a ride to his office even if it is for a check up because I can’t drive that distance back and forth in one day. My husband has to take a day off from work for these doctor appointments. We are fortunate because his job offers FMLA, Family Medical Leave Act, so his absence is paid for.

But going through this, makes me want to research New York movers and move to a big city so I can find a specialist close to home. For those of you who live in rural areas, does this same thing affect you?

Voting For People With Disabilities

Posted by Connie on Sunday, November 2nd, 2008 at 9:58 pm and is filed under Uncategorized.
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You have the right to vote! From the NP Action site:

Disabled Americans have a constitutionally protected fundamental right to vote, just like the rest of us. Beyond this constitutional protection, federal and state laws ensure access to voting places and systems. Election officials must comply with these regulations to avoid litigation. The law gives disabled voters the same opportunity to vote as able bodied citizens, even if extra assistance by election officials or poll workers is required. For example one election law expert suggested offering curb side voting for disabled voters administered by trained poll workers. In general, polling places and workers must be sensitive to the needs of the disabled and make good faith efforts to provide at least the minimum of statutorily defined accommodations at each site.

Federal laws that protect voting rights of the disabled are:

Voting Rights Act of 1965- In addition to providing sweeping protections for minority voting rights, the VRA allowed those with various disabilities to receive assistance “by a person of the voter’s choice”, as long as that person was not the disabled voter’s boss or union agent.

Voting Accessibility for Elderly and Handicapped Act of 1984- Mandated “handicapped and elderly” access to polling places, and provided for the creation of permanent disabled access voter registration sites.

Americans with Disabilities Act of 1990- Prohibited discrimination against “individuals with disabilities” and required that accommodations be made for disabled citizens at places of employment, public service, as well as private operators. The ADA was enacted to ensure that the historical exclusion of disabled Americans in numerous areas, including voting, would be scaled back significantly. Sixteen years after the passage of this landmark legislation, compliance issues remain, with suits filed against local governments to compel better and faster compliance under the law. Read about a recent case here.

If you come across any type of difficulty voting, be it gaining access to your place to vote, voting itself or discrimination from poll workers, please call the U.S. Department of Justice, Civil Rights Division at 1-800-253-3931(voice) or 1-888-305-3228 (TTY – For those who are deaf or hard of hearing). Call right from the polling place if possible. Do not let anyone take your right away to vote! There will be poll watchers available and on call all day during Election Day, November 4th.

There are also volunteers who will be manning the phones for any type of problems at the polls so that these can be handled as soon as possible. In case your issue cannot be solved right away, you have the right to vote using a provisional ballot. But that is a last resort. So please know your rights and take action by calling if there is any problem you come across.

Here is a great video called My Voice, My Vote about your right to vote when you have a disability:

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