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May 19, 2010 - 2 comments

Well, here I sit. Dog tired. What a great time we had at our party for Hayden's Confirmation! We had it two weeks later than the actual ceremony, because of my migraines and weakness. I'm so glad we waited. We had a beautiful day and I was in much better shape to be a hostess w the mostest.

I was able to paint much of the main floor in the house as I took my time and rested lots in between portions of walls. I distinctly recall that when I painted some in March, I had a good time painting, and thought to myself that I was in great physical shape. Since my weakness started in the beginning of April, though, it was much harder and I needed to rest if not sleep in between small stretches. I am SO proud of myself for doing so much physically. I tend to take it easy if not pressed to do anything out of the ordinary. I'm awfully sedentary, and want now to do things while I still can. Yep, I'm pretty proud of myself. And all in the family LOVE the paint job! I think it looks really nice.

The party was fun, and Hayden did a good job of talking to everyone who came. What a cool kid! I was on my feet way too much that day and could barely shuffle midway through. I know people noticed, but I can't do anything about these things. They will have to accept that this is me, just as my husband and boys and I have. I can put on my happy face (I AM happy), but I will not pretend that I am not weak, as I have tried to do in the past. This is me. It was a bit empowering to accept it myself at the party.

David was such a great help. I love that he looks after me and follows me around with a chair. The boys do, too. Not Scott, my oldest, 21, who is still in denial about all this. He thinks I need to exercise more. He is having a hard time still. It makes me feel bad, but I know he will come around. He's not nasty about it. But it still hurts me a bit.

After the party, David and I rested a while and talked about the party before cleaning up. After we rested, I COULD NOT get up. So, I rested until I could make it up to bed. David did much of the cleaning w the boys. What a great day...

The next day, I folded up the chairs and walked them over to the garage. I tidied up the odds and end things that were missed on Sunday. This just about killed me! I started my sexy shuffle again and was terribly out of breath.  I left the rest for the boys to do when they got home from school and before the rain came. I rested again before Riley's baseball game. We survived the downpours and I'm glad I went instead of staying home, as I would have liked to rest more. He is so cute! And a great pitcher!

Yesterday I got more of the house done, a bit at a time. It hurt and made me tired, but I am glad to have it done. My vertigo has gotten better over the last few weeks and my migraines are done now that I am back on Topamax. My legs are not good. Zanaflex helps with the pain and cramping. My left eye is still droopy and I can't lift my eyebrow. Riley, 9, keeps asking me if I'm angry. We were sitting on the couch, and he looked into my face and said, "Mommy it looks like this eye (left) is angry." I told him it was just tired. I think it will get better in a few weeks. OK. Every now and then, he asks if I'm angry or if my eye is still tired. He thinks I should get more rest, he says. I agree!

Last night, I was woken up with new tingling, or rather, tingling in my right leg that I haven't had for quite some time. It was so strong to the point of being painful and woke me a few times. I had a bit of double vision which I usually can avoid if I keep my eyes closed when lying on or turning my head to the left. Hate that. Such an unusal sensation. It was not a restful night, but I will nap before work today.

So, here I sit........

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572651 tn?1531002957
by Lulu54, May 19, 2010
And if you are just going to sit, I am glad it is at your computer and being in touch with all of us here.  We miss you!
hugs, L

220917 tn?1309788081
by Momzilla, Jun 08, 2010
Well, I'm doing my best to adjust my attitude. I am struggling a bit still after my awful visit to the Mayo Clinic in Rochester and then the dismal follow up with my neurologist. It has been quite some time since my return from Mayo (last October!) but I still feel a lingering sting. They were just awful to me there. The staff was great, but the doc in charge of my overall visit and the pulmonologist fellow were utterly dismissive.

I thought my neurologist would step up when I returned, and having had Mayo test everything, would decide there was only one diagnosis left. Didn't happen. I remain undiagnosed and terribly frustrated.

I have been praying about all these last years (since Jan 05) and pondering where I am, who I am, and not allowing all this to define me.  God is good. He's always carried me through and I know He will continue to do so.

My task now is to just give it completely over to Him. Things will happen when He is ready. I'm trying my best to do this, honestly. It is tricky. But I know that He has always been in charge and I must concede.

He certainly gives me good support in friends and family in the meantime.  And who knows....maybe it will all make a delicious book someday......

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