A Meeting of 2 'Families'

[Joefnh]

Well this past week I had a wonderful opportunity to meet up with PP member NancyL and her husband Ted and was able to enjoy Nancy's world renowned MC safe baking.

This was also a meeting of 2 families' so to speak, the 'Potty People' and the 'Snowflakes'. As many of you know that in addition to MC I am dealing with a form of autoimmune muscular dystrophy called Myasthenia Gravis (MG) that in my case has been affecting my ability to walk, swallow and breathe.

So far being very careful to stay on a MC safe diet (GF, DF & SF) and avoiding all of my MRT identified problem foods as well as pursuing meds to control the MG autoimmune reaction has been able to keep my symptoms manageable.

As part of this, through a support group I have met a wonderful friend Cindy who also deals with MG, who I have had the chance to introduce the benefits of a gluten free diet to. This past weekend Cindy & I met up with NancyL and her husband for dinner and then Nancy shared with us some great MC safe deserts. This was a meeting of the "Potty People" and the "Snowflakes". The reason the name snowflakes is used for this support group is that just like there are no 2 snowflakes the same, no 2 people are affected the same with MG.

One of the common threads is that there are several members that deal with MG that have found the benefit of a GF diet. I have been able to point many members there to various resources including this site for information about the importance of a GF, DF & SF diet. While in the case of MG we do not see remission though diet alone it does help and is considered by many one of the important management tools.

As far as a quick update I am doing 'ok' as long as I keep up with my meds. I go back into the hospital all of next week for a series of chemotherapy infusions and will get to use my newly implanted port-a-cath for the infusions, which will make hooking up to the machines a lot easier on my arms. The port-a-cath is a cardiac central line that has an implanted port under the skin in your upper chest that has a catheter routed from the port to just outside your heart. They use a special needle to give you the medications through the implanted port through the catheter. This way you can avoid using the smaller veins in your arms or hands as they generally do not tolerate this type of medication.


I hope all have a great MC friendly Thanksgiving...


Here are a few photos from our get together.

Here is from left to right: Ted, Cindy & Nancy (NancyL)



Here is from left to right: Joe (joefnh) , Cindy & Nancy (NancyL)

[Kari]

So good to hear you're doing reasonably well Joe. Thank you so much for sharing what's happening with you, as well as the wonderful pictures of your PP meet-up!!!

Hope you're enjoying a Thanksgiving day filled with MC friendly goodies .

Love,
Kari

[UkuleleLady]

Hi Joe,
Thanks for sharing. I am glad to hear that you are getting your symptoms under control, and that you have so much support. I'm sure you have a lot to share with your MG community.

Best wishes with your therapy next week.
Nancy

[tex]

Hi Joe,

That gathering seems to fit right in with the spirit of Thanksgiving.

You know, it strikes me that one of the most troubling aspects of these diseases, to my way of thinking, is that they don't seem to select victims randomly, as one would expect. It may just be my imagination, but IMO they appear to concentrate on the nicest people in the world. That's a bittersweet observation, and though this may be beyond our understanding, maybe in some convoluted way, it's a badge of honor to be selected.

Thanks for sharing.

Tex

[nancyl]

Tex, that is quite a compliments to all of us. Do you think all of this is some sort of test? I do think it makes us stronger, well, probably not while we are flaring. I never felt so weak in all my life as when I was flaring until I finally got help with a good doctor, diet changes, and Entocort, and of course the PP.

Joe, Cindy, Ted, and I, had a wonderful day. A great meal with Joe and a new friend, who I hope we see again, Cindy. We certainly had a lot to share and talk about, A lot of new things for me to learn about MG. My husband is a good egg and listens well, that's because he likes Joe. We do let him talk once in a while. LOL

I hope everyone here had a wonderful Thanksgiving. We celebrate ours tomorrow.

Nancy

[Jeanemcl]

Love hearing of a nice day...and like Tex's post !!

[mzh]

I wish there was a "like" button. :)

[dfpowell]

Great looking group, it's so nice to see everyones picture. Loved Tex's post, feel honored to be a part of the internet group.

[Lesley]

I also miss the like button, though I always want a LOVE button.

What great pictures, and what a lovely meeting.

Nancy you and your hubby look great!
Joe you look really good, and Cindy sounds terrific.

[Gloria]

What great pictures! It looks like everyone enjoyed the get-together.

Gloria

[jmayk8]

Great pictures, thanks for sharing! :)
Jenny

[Martha]

Thanks for the pictures. I love to see Potty People and their families and friends.

[DJ]

Thanks for posting the pictures Joe. This is a Thanksgiving thread to be sure. Such a nice gathering and such warm comments from caring people. Thanks for letting me be part of your group

[MaggieRedwings]

Great pictures Joe and thanks so much for sharing. It is always nice to make another great friend.

Love, Maggie

[CathyMe.]

Thanks for sharing Joe and thanks for the update. Will be thinking of you next week.