Friday, November 25, 2011

On Holidays with Myasthenia.....

For those of you with Myasthenia, you know why I chose this photo. For those of you without, it is to give you a sense of what it feels like to walk in our shoes all day every day. It is like walking against the wind. Perhaps that gives a better perspective as to why we look normal in the morning and by evening everyone around us is telling us to "sit down" and asking "do you need help?" and "are you alright?"

These are all kind questions and we get used to them, however with someone battling the same roller coaster day in and day out it can be overwhelming in large quantities. I was always one to like the spotlight, I used to sing onstage for crowds, I enjoy public speaking...yes I am strange like that and no I don't claim to have the "moves like Jagger." But back to my point, while concern is kind it is not the type of attention I like or am comfortable with.

So this is how yesterday went for me:
6:30AM - 3:00PM - Worked, not too busy but enough to not be boring
4:30PM - ate a fine dinner prepared by my hubby and kids (I helped with the bisquits)
5:30PM - feeling pretty weak but not wanting to let anyone down went to my in-laws with Cindy
6:30PM - started feeling the dreaded full on weakness wave (the fact that I couldn't speak louder than a whisper by 5:00 should have been a clue but I am still hard headed an yes a bit in denial)
7:00PM - asked for a ride this point I couldn't lift either foot off the ground, was full on slurring my speech, and one eye was half open...this is when the barrage of concerned questions came about and also the time I just wanted to crawl into my snail shell and hide.
7:30PM - is good (or the same as it was yesterday)

Which brings me to the next topic I wanted to cover: I have lost the ability to assess myself.

As I have become more ill, I have avoided more outings, I am less social (well in the physical sense, I certainly make up for that on the phone and online) but I used to go out with friends all the time. So I am home and I accept my limitations and do what I can when I can, then I rest and I don't really take stock in how/when I am feeling weak like I did at the beginning of this illness. But the reality is (I realized last night in response to said concerned remarks) I am a wreck every single night. There isn't one day that goes by that I don't have double vision in the evening, lose the ability to speak like myself, lose the ability to lift things heavier than a water bottle and sometimes that too.

I am writing this post because last time I saw my neuro I told him things are going well, they are the same. Well they really aren't if I am honest. I am getting worse, slowly but surely, and I am just sitting here accepting it. Well I tell you what, I am not ready to give up the fight...I still have a chance at remission and gosh darnit I am going to fight for one.

So family and friends, that is what a Holiday is like with Myasthenia

Monday, November 21, 2011

I feel like George Bailey..

While my life with illness has been an open book on my blog I am very secretive when it comes to my family and my finances. At any rate, things have gotten very difficult at home (gulp, can you hear me swallowing my pride), with surprise dental issues with the kids and more (yes more) hospital visits from me, and a surprise increase in our monthly mortgage...well we hit a wall.

My sister, my amazing sister, set up a fundraising page for my family and I am just overwhelmed by her kindness, the kindness of strangers, and of family and friends. I think we just might make it through the holiday season.

Pat has been amazing, cleaning, cooking, going to school full time, and being a full time chauffeur to the kids and myself (with all my doctor's appointments I don't know how he has time to study or sleep).

Since it is Thanksgiving week I just wanted to say how thankful I am for my wonderful family, friends, family of "Snowflakes", doctors who love and listen to me, and in thankful memory of the most wonderful mom a girl could ever ask for. She was only 47 years old when cancer took her from us. So, thank you Lord for surrounding me with good, caring, and loving people!

Here is the link my sister set up, her words make me tear up everytime I read them: