Sunday, December 19, 2010

I See You!!

Well, not really. I have had a tracker on here since I started the blog and on every Wednesday it sends me an email that tells me how many hits the blog has had. It doesn't tell me who, just what part of the country and how long the visit was. I can see if someone just clicked on the website, or if they actually read any of it and how long they were on it. Normally I get about 5 hits a week. But since Thanksgiving I have been getting about 15-20 hits, and they are the kind where people are reading it and staying awhile.

I wonder if people are happening across my page by accident? After all, if you type "Dr Demetrius Lopes" into Google, this blog is 6th down in the results. (I wonder if he likes that, lol). You can find it if you type in "brain aneurysm" as well. Or, maybe there are a lot of people out there who miss dad and want to go back and re-read some stuff. I like to think that is the case.
I hate not writing on here anymore, but I really don't have anything interesting to write. I'm not fighting any type of battle trying desperately to save someone's life. I am just me living day to day still trying to adjust to not having my dad around. It STILL sucks. But, I can't ramble on day after day about missing him. I can envision all of you hanging yourself or pouring gasoline all over about to light a match like two people in Airplane do who are listening to Ted Stryker go on and on about Elaine.

I am just a girl who still wants to pick up the phone and tell her dad stuff, who wants to ask him his opinion, who still expects to see him sitting in his chair when I walk in the front door of his house. I still have been expecting his call today on what is my 35th birthday. So, my inattention to the blog is me trying to get over the loss. By seeing that there are people out there who are still reading it, that leads me to believe that there are others out there as well still trying to get over it. It is very touching to me knowing that.

Jordan and I this year went and got tattoos of dad's signature on our arms. Hers on her wrist, mine on the inside of my left arm. I am pretty proud of them and am so glad we got them. I spent my whole junior high and high school career forging his name so what better way to commemorate him than with his actual signature. The signature we used was actually from a letter my dad wrote to the school about me forging signatures. HAHA!! Martha found it while looking for a good one for us to use. I love them!

I have been carrying on dad's photography business and I have been really busy. I am really glad I took photography in college (University of Southern Ankeny) because I never really thought I would end up taking over for dad, let alone liking it so much. I hope to make it a full time career some day. I almost feel as if he gave me the tools to be able to succeed without him here, and I am so thankful for that. With him getting sick, I found my purpose. Weird, huh?

I have also been doing a lot of research in my spare time on everything I can find out about Ehlers-Danlos. I was diagnosed with it when I was out of high school and other than hypermobile joints, joint pain and a few other annoyances, I never thought it would be anything tragic. I kept saying to the doctors when dad was sick that I had it, its genetic so I got it from one of my parents! I knew it had to tie in somehow. I found on the Mayo Clinic website that Ehlers-Danlos is the number 1 genetic cause for brain aneurysms:

Some disorders present at birth are known to increase the risk of brain aneurysms. These include:

  • Inherited connective tissue disorders, such as Ehlers-Danlos syndrome, that weaken blood vessels
  • Polycystic kidney disease, an inherited disorder, that results in fluid-filled sacs in the kidneys and usually increases blood pressure
  • Abnormally narrow aorta (coarctation of the aorta), the blood vessel that delivers oxygen-rich blood from the heart to the body
  • Cerebral arteriovenous malformation (brain AVM), an abnormal connection between arteries and veins in the brain that interrupts the normal flow of blood between them
I KNEW IT!!! The problem is, Ehlers-Danlos is known as a "Zebra" disease. For example, when you hear hoof beats, you automatically think horses. So, when you have a symptom, doctors tend to think of the most logical cause which makes EDS hard to diagnose. Plus, the severity of it runs differently in people. My dad was never bendy, but his sister is crazy bendy like me. I have pain, she doesn't. Scott has pain and is bendy too. We all have tachycardia, small mouths with crowded teeth. (imagine me with a small mouth. Yeah..I know. Dad had one too!! ) We have horrible scars, anxiety, high cholesterol, TMJ, etc. These are all EDS related. EDS is a collagen deficiency. Collagen is what holds your body together in what makes up your tendons and ligaments, and your vessels and nerve pathways.

Most people who have a brain aneurysm don't know it, and they rupture at 5 mm. Dads was the size OF A GOLF BALL!!! So, unless he had some sort of jacked up collagen that made his vessels extra stretchy to allow for it to get that big, then he was some sort of walking miracle that he didn't just drop dead. So, anyway, I have started focusing bringing awareness to this disease and learning all I can about it. Maybe in making more doctors aware of this, it could change the course of treatment for those who have it. Dad was a fighter and so am I. I think this is the best way to honor him is to try and help others. If you want to learn more about it, go to:

Anyway, everyone in the family is doing really well. Jordan is a sophomore at Creighton, still studying nursing. Martha is watching Jordan's fish. Scott and Kelly are raising Zane on Thomas the Train. I am surprised Zane doesn't sound like Alec Baldwin when he speaks. Debbie and Jim are proud grandparents to baby Hunter who was born in August I think? Debbie is hobbling around on a severely sprained ankle from falling down the stairs. Joan is still loving it in her elderly community living. Adilet is back in Kyrgyzstan and we are trying to get him back here since his government is in upheaval. Not much luck there though.

Anyway, I hope everyone has a fabulous holiday with their loved ones. I wish nothing but the best for everyone in 2011. I will try and keep this blog updated a little bit better and thank you all for continuing to peek at it now and then.


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