Thursday, June 24, 2010

Summer and MG

Since we are in week two or more of weather in the 80's 90's I thought I would take a moment to address MG and heat. People with autoimmune diseases know all too well what the worst triggers for their illness are. These include stress, illness, infection, and obviously heat. Thankfully I have air conditioning, however it is a catch 22 because I LOVE SUMMER. Unless I am in a pool I cannot tolerate the temperature if it is above 75, I literally melt.

This morning it took 2 hours for my legs to work well enough to get out of bed. It is now 5:20pm and I am still stumbling and using the walker for safety reasons. In addition to my legs giving out the MG has attacked my muscles used for speech so it has been a quiet day in my home. I sound like a drunk when I talk and if I talk too long I have swallowing difficulties.

I know this sounds absolutely mortifying and while it is no walk in the park I am thankful that I have kept the breathing and swallowing difficulty at bay enough to avoid the hospital. Tomorrow is treatment day for me and for those of you who follow my blog you are well aware that as the days draw nearer to treatment I go downhill. The heat has just gotten the best of me this go around. I think two weeks ago it was my legs and eyes. I don't know why my legs have been a constant as I rest them when I am weak, maybe they just haven't had enough time to recover?

Some good things have happened in the past week that I would like to post on as well. Saturday was the Annual Meeting for the Great Lakes Myasthenia Foundation and it was a wonderful event. I met some new people and got to meet a few friends in person for the first time. The speakers did a fantastic job. Lisa Gigliotti was there to tell her encouraging story of living with courage and battling RA and MG. Dr. Glisson, a neuro opthalmologist presented a great presention with video on Ocular MG.

Wednesday, the radio show I taped 2 weeks ago aired locally. You can download it for free on iTunes, just search "The Johnnie Tuitel Show" or you can listen to the podcast here...

I hope my readers are having a strong blessed week!

Thank you for the Award Kerri

My friend Kerri gave me this award. Thank you Kerri! Kerri is a fellow myasthenic, compassionate, an amazing author, a devout Christian, and most important an amazing friend and source of inspiration...

So my instructions are pretty simple and straight forward:

1. Thank the person who gave you this award. -- Check►

2. Share up to 10 things about yourself. Short & sweet

3. Pass the award along to up to 10 bloggers who you have recently discovered and think are fantastic!

4. Contact the bloggers you've picked and let them know about the award. -- of course!!!"

About Me:
1. I am a proud mama to a 10 year old - John and 4 year old - Cindy

2. I have been married to my amazing husband Pat for 11 years, love you honey!

3. There is no greater gift for me than the joy of doing things for others, I have had to get creative with this over the past year as my illness has stripped me of doing anything physical but I like to give emotional support or information on topics I am well versed in.

4. I wear many hats, I am a full time work from home travel agent, I moderate an MG support group (see link on the left for the google group if you have MG), I blog, I vlog (see you tube link on the right for videos on MG).

5. I just taped my first radio interview and it was a blast! You can listen to it at

6. Before I became ill I loved to sing. I was in a band and frequented many karaoke hot spots.

7. I am a glutton for reality TV and medical dramas.

8. I love to read, when I don't have double vision:) My favorite author is Robin Cook.

9. I am double jointed and have hyper flexible joints, great for entertaining friends when I was a kid!

10. I love to travel, I have been to Luxumbourg, Germany, Sweden, Jamaica, the Bahamas, St. Thomas, and all over the United States.

Bloggers I would like to pass this award to.
1. by Kelly and Katy on infertility and the amazingly generous gift of surrogacy
2. by Colleen an amazingly strong young woman battling Pulmonary Hypertension and kicking some butt
3. Wendy who is living life and battling MG
4. Lisa, who has faced more than anyone should have to face and came out on top with Corragio! She wrote a book on RA and MG and is an amazing lady
5. Tom, blogging about ocular MG, he has done a ton of great research on the subject.
6. great blog for fun and givaways by a mamablogger
7. a mom posting about her daughter's battle with MG and she recently started her own foundation.

Thursday, June 17, 2010

I went to my office today...yeay!!

I wish I could say it was to work but at least I got to see the many faces that were a part of every weekday for so long. I was there about an hour to get some things that I have needed to make it easier to work from home. Everyone was so great. I am plum tuckered out tonight though. Our building is HUGE, I mean take four Wal Marts and stick them together huge and my office i smack dab in the middle so my legs are not working so great but my heart is happy.

I really miss being there so much. I am blessed to be able to work from home but it is such a great company, my co workers are like family and I miss them. Thank goodness I brought the walker or I would probably be in the hospital again but it was so worth it.

All things considered I am doing quite well today. I think the IVIG had a delayed reaction this go around so the breathing difficulty I had at the beginning of the week has subsided and the fatigue has calmed down.

On the kid front, John finally met some neighbor kids and is having a blast. I am hearing "I'm bored" way less. On the negative side, there are strange children in and out of my house and boys like to eat so the pantry runneth bare. Thank goodness I get paid tomorrow:)

Over and out.

Monday, June 14, 2010

Radio Interviews, IVIG, Gardening, Naps, Oh MY...

So I didn't' post as promised. The interview, while fun as all get out, was also quite a bit of an energy sucker...note to self, don't schedule radio interviews 2 days pre-IVIG... Anywho, I made it through the interview and it will now air on Wednesday June 23rd at 10AM on WPRR. The best way to listen is to download it for free on iTunes under The Johnnie Tuitel Show. It will be available a couple of days after the air date. We discussed Myasthenia (by the end of the interview both Johnnie and Angie Kay could pronounce it), we discussed "invisible disibilities", and we discussed funny topics, it should be a great show.

IVIG - Went so well that I think I was only awake for about 30 minutes of it. On the flip side, I am still quite tired and my nose is stuffed so I may be catching a bug. I just have absolutely no oomph, no get up and go, and my eyes are having less and less normal periods which is really having an effect on driving.

Gardening - Okay so I have a self proclamed "black thumb" however, this year, I have been able to keep 2 house plants alive for more than a week (actually going on 6 months), and my flowers outside not only look good but are growing at an exponential rate. I finally figured out how to dead head. So, I may not be a complete and total tool when it comes to gardening...woo hoo.

Naps - need 'em, love 'em, gotta have 'em. It is a necessary evil when you are weak and tired 24/7. I never, NEVER used to nap, now I am napping almost daily. Okay, Update-complete.
Out - Jen

Tuesday, June 8, 2010

Going on the radio for MG Awareness..woo..woo!

So, I am very excited to report that tomorrow I am taping a radio show for MG awareness tomorrow. It will go on air next Wednesday on WPPR 95.3 in Grand Rapids or you can download the podcast on iTunes for The Johnnie Tuitel Show. Johnnie runs a local charity called Alternatives In Motion which gets wheelchairs for those whose insurance will not cover it. He is also an author, a public motivational speaker, and now a radio host.

I am just excited to have the opportunity to spread awareness. I will report more tomorrow...stay tuned!

Monday, June 7, 2010

Things don't always go as planned...

Well, I was very excited going into the weekend as it was my 11th wedding anniversary on Saturday. We arranged for my sister to take the kids overnight, we have not had the house to ourselves in 4 years! And I figured it couldn't be worse than our 10 year because that was the day I was admitted to the hospital with stroke like symptoms and this MG rollercoaster began.

Anyway, I digress, instead of a quiet, romantic weekend. My sister's kids were sick and our family got a stomach bug. So, I think we will try again next weekend...wish us luck.

On the MG news - I am pretty weak today, I think it is fallout from getting sick. Though the heat wave has seemed to have passed and that is helping with the breathing difficulties. I am looking forward to my treatment this weekend and hopefully some alone time with the hubby.

Friday, June 4, 2010

Blog Hop Friday, please view the MG Awareness video below

Well, it is Friday once again. Time for a blog hop. This has been one heck of a week but we are getting through it. It has seen ups and downs but my symptoms are controlled and that is what counts. I wish all of you a Blessed weekend. Please click the link below to blog hop and remember to leave comments!

Wednesday, June 2, 2010