Monday, November 23, 2015

How to Make Multi-Generational Living Work!

I searched "Multi Generational Living" on Google today to see if my blog shows up, and it's the very last link on page 1!  Not to shabby for only being 2 months into this.
I also found a great article today on Multi-Generational Living, and wanted to share!  I think we're on the right track so far!  Planned for Christmas Vacation is a whole family discussion and update about where we are in the process, and future goals prior to May. =)  It will be in a neutral location, now that I've read this article...good point!

http://www.forbes.com/sites/bethbraverman/2015/06/18/how-to-make-multi-generational-housing-work-for-your-family/

Hope you enjoy!

Thursday, November 19, 2015

Sharing a Paid Research Opportunity!

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Monday, November 16, 2015

Tired Lately

Not much new progress to report.  I've been feeling really exhausted lately, to the point where I cannot function normally, and my shortness of breath has increased as well.  Most of this blog is about our Multi-Generational living, but it's also about our lives in general...so I've decided to share that I have a major health condition that affects my daily living.  It's a genetic heart disease called Hypertrophic Cardiomyopathy.  There is no cure or way to treat it, therefore I live with a lot of undesirable daily symptoms, such as fatigue, shortness of breath, dizziness, heart arrhythmias and chest tightness.  I cannot work because of my disease, and am permanently disabled.  Most days I can push through as long as I rest while the kids are in school, etc, but these past few weeks I've felt worse.  I've made my doctors aware, and we are keeping an eye on it.
The good news is that I finally got an appointment for a second opinion at Cleveland Clinic in Ohio!!  Tony and I will drive up there next month, and I have a day FULL of appointments (7 to be exact) and testing, as well as an office visit with the #1 doctor in the US for this disease, Dr. Harry Lever.  He has dedicated his entire career to treating and researching this disease, and called me PERSONALLY on his cell phone during his lunch to go over my medical records, etc and tell me how important it was for me to fight my insurance so he could see me.  We finally got it approved last week and I'm very excited!
Vanderbilt has me in their Advanced Heart Failure Clinic, but it is not specific to my disease, although I do have end stage heart failure because of it.  This makes treatment quite a bit different, and I'm not sure Vandy is making all the right decisions.  At this point, I get my heart retested every 3-6 months, and we are just waiting for it to get "sick" enough for me to qualify to be on the heart transplant waiting list.
When I see Dr. Lever, they will redo all testing and make advice about further treatment.  He may tell me that Vandy is on track, which is great.  Or, he may say that I qualify for an open heart surgery that will help my symptoms, which would be great, and would likely hold off transplant that much longer!  Either way, I think the appointment should be positive.  I'm a little anxious, but in a good way.
Because I haven't been feeling myself, Tony has picked up a lot of my daily activities with the kids, and I've been going to sleep by 7:30 each night.  My heart is just tired.  Vandy wanted to move up my testing to see what's going on...but if we do that, the insurance won't pay for the testing that I really want to have done up at Cleveland Clinic.  So, I am toughing it out and checking in with my doc here by phone weekly.  I'm feeling a little better over the past few days, and trying to just rest more in general.  With the recent move, I gained a few lbs and also had more activity than usual (which is not a good thing for me, as I'm exercise intolerant) and the combination of those two things may be what's making me feel bad.  My doc suggested I get my eating back on track (which I already had started) and take it easy physically.  She also said to keep a daily journal with my weight, blood pressure, and heart rate.  This will show if I'm having any fluid retention, and I'll also have it for Cleveland Clinic, which will be helpful for them to see.

Arahn's birthday was Saturday, he turned 10 years old!  We had a great party at Dave and Busters for 10 of his friends (mostly from school) and they had a blast!  It's the first time we've paid for an organized party like that, but I was so relieved to have everything done for me with the way I've been feeling.  All we had to do was show up with a cake! =)

This week is pretty relaxed, I will attend bible study and finish a book.  Then this weekend we will celebrate "Friendsgiving" on Saturday with our small group.  Tony is responsible for cooking and bringing the meat, and each couple is bringing either an appetizer, side dish, or dessert!  It should be fun.  Sunday is Alannah's first cheer competition.  It's here in Nashville, and should be fun.  Looking forward to a great week!