Secret Santas, End of Year Stats, and New Year’s Eve

December 31, 2012 — dorkydeb

Since I last posted, things have been a bizarre mix of crazy and calm.  I’ve had some better MG days, and another bad MG crash. (Totally my own fault there. I had a great day and busted my butt cleaning house and doing other things that had been driving me nuts. Which resulted in me over-doing it, and not laying down to rest all day long, because I thought I didn’t need to.  And then it all caught up to me all at once and I paid for it in a big way later that night.  You would THINK I would learn by now, but apparently I’m pretty dense.)

We had a happy Christmas, and some major stress.  We had our furnace go out again, and had to have it repaired again.  Will and Emma had a great Christmas. Ella managed to speak a few times and said some totally awesome things, and she said one thing that was incredibly sad and left me praying for emotional strength (more on that later).

She did new things this Christmas, and did them well.  She also had a bad reaction to a new food we tried, that has triggered a major set back.  She is having issues that haven’t been a problem in at least 6 months. And the bruises on my body are a visible sign of the extreme tantrums that she has been having at times. Trying to help her through this has been heart breaking. I believe we are starting to see a little improvement yesterday and today (slight, but there), so I am cautiously optimistic that she may be starting to come out of this. It is shocking what one bad food reaction can do to her.

I will try to update on all of the Ella stuff (good and bad) over on Enduring the Silence, when I have more time.

But for now, I just wanted to touch base, and make one last post here for 2012. It’s been another crazy year of highs and lows – thus is life.  You have to learn to dance in the rain.

Speaking of dancing in the rain, we had a couple of different “Secret Santas” that blessed my children this year. And for that I really cannot say enough thank-yous.  We received a package from a secret Santa from Illinois.

IMG_52002cx400

When we got the call from the post office that we had a package over there (yes, we got a call – our post office is cool, in a stepping-back-into-Mayberry sort of way), she said “I’m trying to get all of the packages out of here before I close, can you guys come over and get yours?”  We were like, “Package, what package?”

We had no idea we had a package there.  With an Ella in meltdown mode, it wasn’t a good time for us to leave and Patty (the post office lady) was shutting down in less than 30 minutes.  So my parents offered to take our key over and pick up our package and mail.  It had presents for each of the kids.  Including Christmas socks, puzzles, and an adorable little bear.   :)

Our church wanted to make sure that the kids had a happy Christmas as well.  I love each and every member of that church.  It is a small church, but with a loving and huge heart.  They are what a church should be. And not because they helped out my kids (although that was wonderful), but because they are truly Godly people and they have never stopped caring for me and praying for me, in spite of the fact that I can no longer physically attend there.  They may not be large enough to have a large youth group and a sound system and 500 other fancy things.  But I can send my children there with confidence that they will meet and know the sort of people that I want them to grow up knowing Christians can be.  Not a church full of judgement and nastiness (I’ve visited a few of those in the past).  But a church that is like family.  People who were good to me growing up (and still are) and whom I know will be good to my children.

And another mystery “Secret Santa” left a bag of goodies next door at my parent’s house, that included toys and a $50 iTunes gift card that will go a long way in helping buy autism therapy apps for Ella’s iPad.

I don’t mean to imply that Christmas is primarily about gifts, my kids know the true meaning of Christmas. I don’t feel that there is a conflict between that and gift-giving, as long as things are kept in perspective.  I taught my children that the reason that we give gifts is to celebrate Jesus’ birthday.  I tell them that we can’t physically put a gift in Jesus’ hands, so we give gifts to loved ones, in celebration of his birth.  And we have a birthday cake for Jesus each Christmas.  :)

Typically we have a plain white cake with white icing.  But this year, the kids had cupcakes and lemon pie for Jesus’ birthday.  :)

(Oh and for the negative naysayers that like to rant about the fact that Jesus wasn’t born exactly on December 25th, we know that.  Our kids know that too.  But they also know that it is the intent that matters, not the exact date.  As I explained it to them, if their birthday falls on a Monday, and we celebrate it on a Saturday instead, it is no less a celebration of their birth.  Same goes for Jesus.  It matters not to me that we have the exact date, what matters to me is the intention behind our celebration.)  

I’m not even going to try to figure out who our Secret Santa’s were.  I thought about trying to figure it out at first, because I am a curious sort after all, but then I decided that it is much more magical to just leave it the way that it is.

So whomever you are, we thank you.  You surprised us immensely and brought big smiles to our faces.

I hope everyone reading here had a wonderful Christmas and for my last post in 2012, I want to thank each of you who take the time to read the posts I write here.  According to my statistics page, my readership now includes 97 countries!  That’s so neat.  And a little freaky too.  LOL!

I know that my posts often range widely – from absolute silly non-sense to serious matters, and my lack of the “required” blog theme topic is considered a no-no in the blogging world – yet you read what I write and care about my little family and our adventures all the same.  And I love ya for it!

:)

Happy New Year!

 

Posted in Around the house, Autism, Blogging, Health, Holidays, MG. 1 Comment »

Challenging Day

November 2, 2012 — dorkydeb

I had intended on posting about one of the suggested topics for today’s NHBPM post, but due to circumstances beyond my control I wasn’t able to and now I am far too tired to do the post that I had intended to do today.  So, I will try to finish it sometime later this month.

For today’s health-related post I’ll give you a brief run down of my day. Both our dryer and our furnace were broken and have been for days.  The dryer is under warranty (thank goodness) but the furnace is another story.  It has decided to be difficult.

I’ve lost count of how many times our repair guy has driven out here this week trying to get it fixed.  Once a few days ago, then a wait time on parts, then 3 or 4 (?) times today.  They even had to get the regional director for the furnace manufacturer involved to try to figure out what in the world was wrong.

As my regular readers know, I have an autoimmune neuromuscular disease (MG) which causes me respiratory issues, and serious problems with allergies and asthma. I started off today with only 2 hours of sleep. Then they had to use a bunch of sealant on the new vent pipes that smells like acetone.  It’s really bad.  And thanks to the progression of my MG, I can no longer tolerate my allergy/asthma meds. They cause me so much muscle weakness that I get too weak to breathe (oh the irony there – darned if I do – darned if I don’t.)  So I spent most of the day praying I wouldn’t die. (I wish that were an exaggeration. It’s not.)

Then when that didn’t work either, the manufacturer tells them that they need to rip out all of the new smelly vent pipe stuff that they did today and try replacing it with a different pipe.  So, all of that was for nothing.  They were willing to come back and do it tonight but I talked to them and told them I need a break.  My lungs are a wreck.  Even now, and after having doors and windows open for hours, I am still miserable from the smell.  And tomorrow they are coming back to do it all over again.

I know from past experience, this stuff out-gases for days. So I would have loved to have had it done tonight.  But I just couldn’t take anymore.  I was looking so bad (pale, etc.) that it was frightening my kids.  And the fumes were making Ella cry.  So I sent all 3 kids to my Mom for awhile this evening (GOD BLESS MY PARENTS! THEY ARE AWESOME!).  We got all the kids back home and bathed for the night and then she’s going to watch them again tomorrow while they are working here again.  I appreciate that so much.  I don’t like it when my kids are worried about me, and I don’t think it’s good for them to breathe the worst of those fumes either.  It can’t be good for anyone. So they will likely go back to Grandma & Grandpa’s house for a little while tomorrow.

Hopefully I can make it through this.  I worry about going into tomorrow already all sick from today. But I don’t really have any choice. It’s cold, and we need a working furnace.  It’s been broken since Sunday, while we waited on parts to come in. Much of that was delayed by Hurricane Sandy – which in our area was a hurricane blizzard.  Which you’ve heard about and saw pictures of, if you’ve been reading my Facebook.

As for some good news, my dryer is supposedly fixed.  I say supposedly, because I haven’t actually tried it out yet. But that repair guy came today too, and he says it is fixed.  My basement smells too much like pipe sealant fumes to go down there and do laundry tonight, nor do I feel up to it.  But I’ve been told that I have a working dryer down there now.

If you enjoy updates about weather and broken appliances, you can keep track of this craziness by following me on Facebook.  (LOL)  Ok… I do tend to post about other things.  It’s just that lately all I feel like I’ve been talking about on there is weather and appliances.   ;)

Hopefully, things will return to our normal soon.  I do have some fun things I want to show you.  Ella did something REALLY cool on Wednesday that I am SO EXCITED share with you on her blog as soon as I feel like it (it involves photos I have not uploaded yet).  And the kids had a really fun time trick-or-treating.  I have photos from that to share too.  Right now I’m just way too tired and kind of in “survival mode” via health reasons.  Oh and I’m not proof-reading this, because I’m about to go attempt to crawl into bed.  So I apologize if this is more scatter-brained than my usual fair.  LOL!

I hope to read the other entries from NHBPM when I can.
I need to give a special thank you to all of my Facebook friends and the members of my MG support group who prayed for me during this mess.  Not everyone understands how hard something so simple can be if you have serious medical issues.

I love you guys!!!

Deb 

Posted in Challenges, Health, MG, WEGO. Comments Off »

How Being Online Can Make You Feel Better About Life

November 1, 2012 — dorkydeb

I accepted WEGO Health’s invitation to do 30 posts in 30 days. Clearly, I’m crazy.

Today’s topic is “My favorite thing about social media, the internet, online health communities, etc.”

I imagine that there are going to be some great posts today from other “health activists”.  I imagine that there are going to be people who are going to tell you how much they appreciate these outlets online for various reasons.  I know that I appreciate social media because I am a very social person, who happens to be home bound most of the time.

Social person + stuck at home a lot = not the best combination

Social media gives those of us with chronic illnesses a way to not only keep in touch with our family and friends, but also a way to make friends with others sharing similar battles.  We can research medications and treatment techniques online. We can find ways to help ourselves. We can join online health communities that can really make an amazing difference in our lives.  I know that I appreciate the friends I have made in my MG support groups so much that it would be hard to put into words.  I could write an entire post about those awesome folks.

But, I’m currently in the middle of an MG flare, in a snow storm (Hurricane Sandy snow to be exact), without a working furnace.  The magical, little, rare part that my furnace needs to work again is stuck somewhere between Cincinnati, Ohio and here. My 3-year-old, who has autism, just finished having a 2 hour, screaming-at-the-top-of-her-lungs and kicking-everyone-that-got-near-her meltdown.  My stomach hurts (probably because I got kicked really hard there) and I’m kind of cold, tired, frustrated, and in need of a good laugh.

So instead of telling you all of the wonderful (serious) things about those topics, I think I’ll tell you some of my other favorite things about social media, the internet, online health communities, etc. Otherwise known as…

How Being Online Can Make You Feel Better About Life
(sense of humor required)

In no particular order:

* Reading the news on the internet.
It makes me feel better about my less-than-stellar grammar skills. I mean really?  Have you seen what passes for a news journalist these days?

* “Friending” your former teachers online.
Remember my “red marks” blog post?  The one about the teachers that would return everything I wrote covered in red marks and telling me I should stick to science and math (the subjects I excelled in).  Well…. now I have the opportunity to watch those teachers post online.  Why is that fun?  Because they screw up too!  Seeing them misspell something or post something incorrectly always brings a smile to my face. I think to myself, “Ha Ha! You’re human too!”

* Health communities.
Sure there are those “winners” kicking your illness’ butt. (Which is great!)  But there’s almost always someone around that is a lot worse off than you are.  Which I don’t wish on anyone ever, but it does remind you to be thankful for what you have.

* Devastating news stories.
Yes, I’m sitting here, cold with my MG in a rage because I don’t tolerate temperature fluctuations well at all. But I’m not in a shelter somewhere while my house is in the ocean.  Can we all take a moment and say a prayer for those folks?  Again, a reminder to be grateful for what we have.

* Reading most teenager’s posts on Facebook.
Seriously, their spelling is so bad that if you are a homeschooler (like me) you think to yourself, “Wow! That’s sad, they made it to high school and they couldn’t get through a 2nd grade spelling bee if their life depended on it.  Clearly I’m doing a GREAT job homeschooling. Because I can’t be doing worse than that.  Yeah!!! Go me!”

* Online arguments.
Yes, most of the time they are stressful, horrible things that I wish to avoid.  But… occasionally they are downright funny.  Sometimes people get into a heated debate and then mess something up and it comes out hilarious.  I’ll give you an example.  Approximately 11 years ago I got into a heated disagreement with someone online and called them an idiot.  And you know what I did?  I misspelled idiot.

Seriously.  How awesome is that?  I called someone an idiot and spelled it “idoit”.  Sure it was just a typo, but it was a funny one.  I love that crap.  I really do, even when it’s me. I mean it serves me right for calling someone a name online.

I can totally laugh at myself.  And it’s a good thing I can, since I seem to give myself plenty of opportunities to laugh at myself!  Usually my opportunities come up in real life, like tripping over things and falling down, etc. but sometimes I share the love online too.   ;)

One of my favorite online disagreements ever was with a group of pregnant women – those groups are otherwise known as “online hormone explosions waiting to happen”.  I came home from an OB/GYN appointment and complained about a woman who had brought her kid to her OB appointment and started pulling out peanut butter crackers as snacks for the kid. She allowed him to run all around the waiting area making a disgusting mess, rubbing peanut butter over more than a half-dozen seats and the carpeted floor! While making zero effort to stop him, or clean it up.

I was forced to leave the room and sit out in the hallway, on the floor, waiting for my name to be called, while pregnant, swallowing Benadryl and praying I would keep breathing. Because I am severely allergic to peanuts (as in I have asthma attacks from simply being near them).  Obviously this is not the funny part of the story.

The funny part is, I came home, made a short post on this group about my appointment and how I wished that there was better education on the topic of allergies.  And I said, “It is so frustrating when someone’s ignorance endangers the lives of others.”  I wasn’t mean-spirited in my post, not at all. I even said something about how I was sure the lady didn’t realize what she was doing. But that it posed a tremendous risk to someone who might come in afterwards and sit in one of those seats, etc.

But I was DOG PILED.  I mean these hormonal women jumped on me like you would not believe.  I came back online to find this long list of posts aimed at me.  And they all were various versions of this, “I know it must have been hard on you, but I wouldn’t have known that either and it’s really not fair to call someone ignorant.”  My personal favorite (posted in all-caps) was:

“HOW DARE YOU CALL SOMEONE IGNORANT JUST BECAUSE THEY DIDN’T KNOW SOMETHING!?!?!?!?!!!!!!!!”

I was like…. Um…. you do know what the definition of ignorant is right?

ignorant:  Lacking knowledge or information as to a particular subject or fact.

That happened years ago and to this day, it still makes me laugh.

If you read this and think I’m a “big meanie” (yeah, I got called that, that day too! LOL) then I’m sorry.  I assure you I’m not mean.  But I do enjoy the lighter side of life.  Not everything has to be serious all the time.

So… hang out online somewhere and have a laugh.  Maybe even at me.  :)

It’s cool, I don’t mind.

 :)

Posted in Challenges, Funny, Health, MG, Weather, WEGO. Comments Off »

Invisible Illness Awareness Week

September 16, 2012 — dorkydeb

September 10th-16th, 2012,  is Invisible Illness Awareness Week.  I thought about writing on some of the various topics floating around in the blogosphere this week. But I decided that there is really only one thing that I would like to say about the topic of invisible illness, as this week comes to a close. It is something that I think we can all take something away from. It is simply:

Try not to assume that someone else has it better than you do.

Everyone has struggles and none of us know what the other person struggles with. Even the person in your life that appears healthier than anyone else you know, might have struggles that you (or nobody else) know about.

I also think it’s important for those of us who are coping with chronic illness to acknowledge that there are two sides to this issue. Speaking as someone who has dealt with both visible, and non-visible health issues, I can tell you from personal experience that both come with positives and negatives.

With non-visible illness:

I dealt with a lot of people who didn’t believe me.  That was hard. Some of those individuals were in the medical field, that was particularly insulting as they should have known better.

But I also had the opportunity on good days to go out in public and have nobody know that something was wrong with me. I could sit in a crowd and look like everyone else. I could walk around a store and look like everyone else. I could go about my business without anyone worrying about me or treating me differently, even if it was for short periods of time.

With visible illness:

Individuals in the medical field (for the most part) don’t treat me like I am healthy and lying anymore. That is a huge bonus. For example when my diagnosis was fibromyalgia and I told someone that I was too weak to do xyz, they might be so stupid as to lecture me on how I needed to exercise.  Now that I have MG that has progressed to the point where I have lost a large percentage of the muscles in my legs and one leg is decidedly more withered than the other, people tend to believe me when I say it is hard for me to walk.

The truth is, I was struggling all along, but when people can see it with their eyes, they tend to believe it more. That’s the upside.

The downside of visible illness, is that I’ve totally lost my anonymity. I can no longer pull off being “like everyone else” for short periods of time.   As much as I appreciate a better understanding from those in the medical community, I still want to be treated as normally as possible.

I miss being able to walk around Target and go shopping for a little bit and not have people look at me with concern in their eyes.

I miss having a body that I recognized.

I miss being able to speak with a friend or family member on the phone and them not be able to hear the struggle in my voice to continue talking, because of weakness in my muscles.

So while (rightfully so) there has been a lot of focus on the hardships of non-visible illness this week, mainly due to a lack of understanding from others, let us remember that both sides of the coin carry their own burdens and their own silver linings.

I wish health and happiness to all of you, no matter which side of the coin you are on.

~ Deb

 

Posted in Health, MG. 1 Comment »

Where I’ve Been

July 15, 2012 — dorkydeb

It’s not like me to disappear. So where have I been?

On Friday June 29th, 2012, we were in the center of a record-breaking storm called a Derecho. Our area in West Virginia was reportedly hit the worst, with winds officially measured at 80mph. There are trees down everywhere. Even 100 foot tall trees were snapped in half, as if they were merely twigs. Afterward, we were hit with two subsequent storms, with winds in excess of 60mph which added to the damage from the first storm. 

We lost our utilities and were even without cell phone service, due to the cell towers in our area being down. To give you an idea of what it was like, the radio said that there were more customers in WV without power than with power, with our county being the hardest hit. We have a normal line crew of 600 workers. They brought in over 5,000 additional line-workers, from over 23 states. Working 16 hour shifts, 7 days a week, (God Bless them all!) and over two weeks later there are still those waiting without power.

Long-term loss of power during a record-breaking heat (some days were 102 degrees, with a heat index of 115) was very bad timing for me, because MG causes me to have serious respiratory issues when I am too warm. We were as prepared as we could be. We had a generator, capable of running a small window air conditioner to partially cool one room. But it was still an unsafe situation for me, and I ended up in the hospital due to an MG crisis.

While I am improving, I am still no where near “my normal”. I lost over 12 pounds during this episode, and from what we can tell, it appears that most of the loss was due to increased muscle atrophy. The additional loss of muscle in my lower legs and upper arms is visually obvious. I am trying hard to take care of myself and hoping that I can get back to where I was before the storm.

Right now I am focusing on recovery and spending time with my kids. I am so grateful to be back home with them. They were very frightened and worried when I went into crisis and it was hard being apart from them for days. I missed them so much. I am so thankful to have my family together at home again.

I am grateful to everyone who has helped me during this time. My husband looked after me both at home and in the hospital, my Mom looked after my kids (it’s no small task taking care of 2 young kids and a toddler with autism!), my Dad has cleared numerous trees, let me use his generator, and kept us supplied with gasoline and oil for the generator (also no small task, as lines were HOURS long to buy gas), and my extended family all checked on everyone and tried to make sure we were all getting by. I am also so grateful to everyone that has worked so hard on the restoration efforts in our area. If you know a line-worker that drove to WV to help out, when they finally get back home, please give them a big huge THANK YOU from all of us here in The Mountain State.

We’ve been told to possibly expect more outages, as they continue to work on repairs. But we seem to be headed in the right direction. The broken lines that provide our internet were reconnected last night, which was my first contact with the outside world in over two weeks.

I’m sorry I left you all hanging with no word – I would have updated had it been possible. But our area seriously looks like a war zone. Please bare with me while we try to find our way back to normal. To those who have reached out to me while I was “missing”, thank you so much for your caring and your prayers. It is very much appreciated. I’ve needed the prayers and still do. Thanks again!

I hope everyone else is doing ok.
Love you all,

Deb

 

Posted in Blogging, Health, MG, News, Weather. 7 Comments »
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