Status Quo

Things here are pretty much status quo.  

Mike did see the new seizure doctor (new to us anyway) at Barrow in August.  I cautiously say we really liked him because we had a bad experience at Barrow when we first moved here a few years ago.  Dr. Saghal had done his homework and knew Mike's entire situation and then assessed him.  He ended up having his attending, Dr. Schusse, come in to the room to be sure they are doing everything they can.  They aren't going to do any new EEGs as of yet because they got all the info they needed from the EEGs Mayo did.  Dr. Saghal IS referring Mike to Dr. Knievel who is the doctor we were hoping to get into to begin with -so that was a relief.  She is supposedly the best in Phoenix when it comes to headaches due to trauma.  Dr. Saghal also made a referral for Mike to see Dr. Cardenas at the Barrow Concussion and BRAINS Clinic.  So now we just wait on an opening to go in.

Mike's still having seizures fairly regularly.  For the first time ever I was able to catch what happens to him on THIS VIDEO.  (It's also in the photos/videos section of this website.)  I will warn you, it's not easy to watch.  But it gives you an idea of daily life for him.  I sent it to our primary care doctor the next day and his reply was "Wow....  just wow!  I had no idea it was that bad...".  I'm glad we have it now so the other doctors can see exactly what I try to describe and the disability court can see exactly what happens!

I guess the biggest thing that's happening right now is we have to go about 3 weeks with NO HEALTH INSURANCE.  We filled all of Mike's scripts the last week on our old insurance and will be buying our own policy October 10th.  We have to wait because it's crazy expensive to purchase your own.  We do have the option of buying the COBRA through my last employer, but it's even more expensive than buying our own.  We are hoping and praying we can get through the next 3 weeks without needing a doctor!  

So - the prayer requests right now are

1)  We won't need insurance this 3 weeks! 
2)  We get a disability hearing date SOON!
3)  We hear from Dr. Knievel and Dr. Cardenas' offices soon with appointment dates

Much love to all!!
Mike & Michelle

Walk a Day in My Shoes...

(Warning...  soapbox rant ahead)

I'm feeling hurt and frustrated, almost even angry this evening after receiving a message from someone that I am so "negative" and not being thankful for what I do have and it's demonstrated by what I post on Facebook.  So, I went back through the entire month of August and re-read my posts....  all 61 of them (wow I post a lot LOL).  Of those, there were 4 that I might consider negative (i.e. today's post about disability) and 2 that were prayer requests.  If those 6 posts upset you or led you to believe that I'm not grateful for what I do have...  I'm sorry!

I guess it leads me to ask a few things....

•  Have you ever watched your husband try to run around or play with the kids and end up in an absence seizure and unresponsive for minutes at a time...  just for trying to be a Dad?
•  Have you ever had to drain your bank account at the 11th hour just so you'd have enough cash to get you through to the next paycheck, knowing that overnight something would clear and leave it in the red?
•  Have you ever not filled a prescription that you desperately needed so that you can pay the athletic fee your child needs to participate in a sport that he/she loves?
•  Have you ever gone to church, gatherings, etc. that were meant for couples over and over alone because your loved one is recovering from a bad seizure the day before?
•  Have you ever not been able to drive to your child's sporting even that he/she loves because you can't afford the gas money?
•  Have you ever watched your child be the patient during a full code in a hospital room?  (and contrary to the belief of a few I do NOT enjoy it!)
•  Have you ever put off appointment after appointment thinking it would fit into the next check's budget?
•  Have you ever held your spouse as he/she cried at night because "this isn't how it's supposed to be...  I'm supposed to be able to work and support you"

I could go on and on....  this is only a list of a FEW of the things that I HAVE done over and over again over the last few years (and some even the last few days!).  But I do still wake up and give thanks for the food on our table, the roof over our heads, and every breath that we take!  And I do still give thanks that I have my husband by my side.  I love my family more than anything and I will keep pushing forward each and every day, come what may!

So unless you've walked a day in my shoes...  please don't judge me for having a bad day.

OK...  off my soapbox now.





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