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.

When you have a number of chronic illnesses you often feel that you’re always at the doctor, but keep your check up appointments. Don’t put them off because you’re feeling well. There’s a reason for these type of appointments. You’ll probably have some tests done and your doctor will do a quick exam.

I put off my check ups in particular one with my eye doctor. I thought I was doing fine. I got some bad news though which I’ll go into later when I feel better about dealing with it. So please take my word for it and see your doctor for your check up appointments.

April is almost done so before I forget I need to do my annual post about Sjogren’s Awareness Month.

Sjogren’s is pronounced SHOW-grins. It is a chronic autoimmune diseases which affects the moisture producing glands. It causes dry eyes and dry mouth, but has other symptoms that can be serious. The best place to learn about Sjogren’s Syndrome and how to live with it is the Sjogren’s Syndrome Foundation in my opinion. They also raise money for research and legislation to help people with Sjogren’s.

This illustration (from Sjogren’s Syndrome Foundation) portrays the many ways that Sjogren’s can affect your body:

Often when you have been diagnosed with Sjogren’s Syndrome, you have other connective tissue disorders also. That is the case with me.

There is no cure for Sjogren’s but there are many treatments available. Be sure to find a doctor that is your partner and treats you as a whole person since there are so many body symptoms that can be involved. Often a rheumatologist, an opthamologist and dentist are your primary doctors.

Please feel free to leave a comment about Sjogren’s Syndrome. I’m not a doctor, but I’m a person living with this disease.

This Is How I Roll, Living Independently With Neuromuscular Disease is a webinar held by the MDA on Thursday, March 25, 2010 at 6 PM EST. Hosted by Vance Taylor, Katrina Gossett and Angela Wrigglesworth, this webinar is geared toward people who want more information on living independently.

Event Address: https://mdaevents1.webex.com/mdaevents1/onstage/g.php?t=a&d=661483220

Event Password: MDAWebEx2010

Call-in number: 650-429-3300 (U.S./Canada) Long distance charges apply.

Suzanne Rogers, star of Days Of Our Lives, has Myasthenia Gravis. She has played Maggie Horton on the show for more than 20 years. Ms. Rogers has been a performer since she was a child, starting with dancing. She danced so well that she became one of the Rockets.

When her singing talent was discovered, she then became an actress, dancer and singer on Broadway and performed on the Ed Sullivan show. In 1973, she became Maggie Horton on Days of Our Lives when she decided that she wanted a full-time career. In 1984, she was diagnosed with Myasthenia Gravis and went through very debilitating symptoms.

Ms. Rogers wasn’t able to work for one year because of her extreme difficulty with speaking, double vision and problems with eating which caused her to lose a great deal of weight. After receiving the correct treatment including medication, she was able to return to work after going into remission. Her character has Myasthenia Gravis too, so she is able to share this condition with her fans and others.

She continues to inspire people by contacting other people with Myasthenia Gravis and is now the spokesperson for the Myasthenia Gravis Foundation.

Although remission is not the outcome for all people with Myasthenia Gravis, it helps me to see that it is possible. I commend Suzanne Rogers from Days Of Our Lives for speaking out about her condition when she could have hid it.

This week, I’ll be attending a blogging conference, IzeaFest. The schedule is full of learning and networking experiences. Normally I’d be worried about being fatigued and not feeling well but after attending the Affiliate Summit I learned how to balance having a chronic illness and being a conference attendee.  Here are the Top Ten Tips To Get The Most Out of a Blog Conference When You Are Chronically Ill:

1. Rest Up the week before. Get yourself into a good sleeping pattern and even take some naps during the day so you can feel well rested before the conference.
2. Schedule Your Time at the conference. Go through the schedule provided including the speakers, events and parties. Prioritize what is most important for your needs. In case you need a break, you can take it during the least necessary events. Although being there in person is the perfect scenario, most conferences are available on video later so you can take advantage of viewing what you missed.
3. Eat Healthy Meals so that you are taking good care of yourself. If food is provided, take fruit or some other snacks with you. Also, remember to keep well hydrated.
4. Take Advantage of Breaks. If you are going to attend parties and other networking events, then use the allotted break times to either nap or just find a quiet place to close your eyes and it easy for a few minutes.
5. Take Your Medications on Time. Keep a timer to remind you to take your meds. I use the silent alarm clock on my cell phone. It can get so hectic that it’s easy to forget to take your prescriptions.
6. Find a Buddy. A buddy can take notes for you, pass out your business cards, let people know that you needed a break, etc.  There are many things that you can do in return - write a blog post about that person, mention their help on Social Networking forums, write a reference for them, etc.
7. Be Prepared to Miss Something. Even people who are healthy end up missing an event or even more. Sometimes it’s just too overwhelming. Travel problems may occur. Healthy people get sick too. There are many reasons. So don’t be disappointed if you don’t hear a speaker or attend an after party.
8. Take Lots of Photos. Keep your camera with you at all times and take photos of the people and happenings around you. Try to write down a short note about the photo so you’ll remember the details later. This will allow you to post about the conference later and create lots of memories.
9. Hand out Business Cards. Don’t push them on people, but after you start a conversation about the other person, ask them for their card, write down some notes on the back and then give them yours. If you can’t do a lot of networking, you can quickly introduce yourself, say that you need a break and really want to get to know them. Ask for theirs first again.
10. Relax and Enjoy! You’ve made it to the conference and that in itself is a big accomplishment. Have fun, meet new people, network and focus on the positives.

My advice for photos is to use an xshot so you can be in the photo too. Plus, using this camera extender will get people to notice you.