I caught a Man Cold!!

No seriously I caught a cold this week and it knocked me flat.  Sick all week, exhausted, hurting, coughing, sneezing, nose that would not stop!  I was miserable, and probably a baby, which made my hubby come right out and say it:  "Honey, Dear, You have a Man Cold just chill the hell out...."
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(laughing hysterically)

Now lets put things in perspective here.  The last time I got sick was 3 or 4 years ago during Christmas the whole family caught the flu.  That's how many years of me not getting sick, and being healthy for the family?  Yeah, okay so I believe it was time for me to get sick.  I didn't want to, but my body said hey there pretty lady I think you're over due for a cold.  I just didn't read the fine print where it said they are going to give me a special cold... a man cold....

I had a horrible 4 days of sneezing, and coughing, and I hate to say it, but in order to just have my nose stop for 5 flippen minutes I shoved tissues up my nose.  Yep I did, up the nose!  I would walk around the house or just sit there with tissue up my nose.  Of course as soon as I sneezed they came out...

During this time, I slept, laid around, I didn't do a damn thing.  Didn't cook, didn't do laundry, didn't drive my kids to school.  It was great! I slept in, and rested.  I can see why men do this!
Now my poor hubby, he had to put up with me, and take care of the kids. I tried really hard not to touch much and not be around especially Declan since I didn't want anyone to catch it.  But that left it all on hubby to get it done, karate, dinner, Declan's dinner, diapers, homework, cleaning, everything....
(hehehehehe)

Now now I was probably being a baby, I made him check my head, more than once, and listen to my lungs for pneumonia.... maybe more than once....   But I was coughing so hard I think I bruised my lung!

Today I feel much better, some coughing but definitely got my energy back. So no worries I will be back to normal very very soon..... or will I?   Having a week off was really nice. ;p

Below I will post the video my husband showed me for my man cold, it is really funny, but I will have you know he didn't cook me any soup, he only had to make dinners...

Also I wanted to say a big thank you to my husband, he has worked hard, and is a great dad.  We love you very much!


man cold video

what is it like being undiagnosed?

Being Undiagnosed sucks... no easy way to say it.  We can't be apart of clinical trials, treatment or cures for a disease we don't have.  We are similar, but not the same.  SMA (Spinal Muscular Atrophy) just got a treatment, it is extremely expensive, but showing wonderful results. I am ecstatic that SMA families are receiving it.  I doubt we ever will be able to use it for us.  Why? Because the test results came back negative for SMA.  Five years into this new world of special needs and we are still undiagnosed.  There are support groups for us, families just like us. Traveling the unknown future. Not knowing what to expect, not knowing how much time we have.  We find groups with similar symptoms and it helps, it really does, but it isn't the same. We are still on the edge unable to jump in.  We come up with names to try to help the doctors and nurses understand what he has.  "congenital myopathy, muscular dystrophy, something similar to SMA or SMARD, but not really cause the results came back negative..." I have said that to so many people, medical professionals, teachers, friends, family.  God Damn It! All I want is a name! A name to curse, and name to fight for a treatment and a cure!

I couldn't sleep last night so I just started writing.  It began with words and became sentences, which became a story.  Don't fault me it was 2:30 in the morning.  Hopefully it will help you understand a little what undiagnosed families are going through.

too cute.

Pen

     Here you have a pen, but you don't know that it is a pen. All you know is it is an object.  You know what it does.  It clicks and writes with different colors of ink, but you don't know what to call it.  You know deep deep down it has a name and all you want to do is to know its name.   

     Here is Sara on the otherwise of the world.  Sara has the same object. Hers clicks and writes with different colors too. But Sara knows what to call this object.  It's called a pen.  She can say to someone "hey I have this pen.  Hey can you hand me my pen..." and everyone knows what she is talking about.  

      Do you know how hard it is to say to some one; hey hand me my thing that clicks and writes with different colors and have them look at you and think you're crazy?    

Now change the pen with a disease name. SMA, SMARD, MS, Cancer...  

My son is one of the many that are undiagnosed.  I know his disease has a name, someone out there already knows the name of it.  I just need to find them so we too can call it a pen.   

     Five years and still no name.  The docs are supposedly getting approval for exome gene sequencing. Its been, I think, two/three years maybe longer.  In the beginning all the doctors wanted to see him, now they are stumped so they move on.  

Well I'm tired of not knowing the name that has hurt my son.  Not knowing what to expect.  Not knowing his future.  Just... not knowing. 

We may never get a name or it may be so rare that my son is the first.  But it doesn't mean we should stop looking. 

-mom

goofball

for serious....