Would You Want to Know? ~ My 23andMe Experience

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Back in December, a friend posted on her facebook wall about a promotion that 23andMe was having. For those that do not know,  23andMe offers genetic testing for a wide variety conditions and carrier statuses, and throws in little tidbits about traits and information about ancestry, even allowing you to make contact with other potential relatives that have had testing done by 23andMe . I’ll admit that I’ve been fascinated with the idea of “knowing” since I first saw a consumer report on one our Canadian station high lighting a Canadian company that had started offering consultations and testing to individuals. At the time, testing was still quite expensive, but it got Mike and I talking about if we would want to know. Mike said, “definitely not,” but I was not quite so sure.

Flash forward a number of years, and here was a 99 dollar deal sitting right there on my facebook newsfeed. After nearly a year of mysterious symptoms, I felt quite justified impulsively purchasing a testing kit that very evening. I could say that I wanted to see if I was at risk for gynecological issues/cancers. I could say that I wanted to get a definite answer about Celiac Disease. However, what I was doing was praying that testing would ease my mind about my absolute worst fear – Alzheimer’s Disease.

Testing was quite simple. I was promptly sent a vial in which to spit. It took a couple days to get around to that as it needs to be done when the mouth is clean and my husband was too grossed out by the thought that I was sitting there in the next room spitting into a “spit catcher”. 23andMe provides a return shipment box. It couldn’t be easier. Spit, pop off spit catcher, seal vial, pop in specimen bag, seal, stick in box, register vial in your name, ship, and wait…..

and wait….

and wait….

Apparently a lot of people took advantage of this 23andMe deal and instead of a waiting time of 2 weeks in took closer to 2 months to receive my report, that was delivered right here to my computer. I was quite impressed with the reports. They were easy to follow and provided extra information on conditions. Increased risks for developing a disease were highlighted in red and you were giving a percentage chance of developing the condition as well as the number of times more likely you are then the general public of getting it. Decreased risks were highlighted in green. Results to conditions that normal cause people more concern (Alzheimer’s, Parkinson’s, BRCA1 and BRCA2) and the were locked so that you could not see your results as soon as you logged into your account and had read additional information before you could see your results.

The carrier status information was pretty straight forward. Good information to have as we have children, but they only test the most common variations and there’s still a chance that you could be carrying a rarer version. I’m only a carrier for 2 of the 30 conditions that they test for. Nice to know that I have a fair chance of making healthy babies (though, those days are likely over).

I loved the information on traits. A lot to read and a lot were bang on. I was a little sad to see that that do not have a resistance to norovirus (stomach flu, and if you know me, you know my fear of that is nearly as great as my fear of Alzheimer’s…..actually, it may be greater). I secretly hoped that would be the case. I did learn that I likely have brown hair, have a high degree of pain tolerance, am more likely to sneeze when I look at the sun and cannot taste the bitter component in cabbage/brussel sprouts. There’s so much to read in this section that I have no done so, yet, and I’ve had my results for several weeks now. I look forward to taking more time at a later date to read it all.

The ancestry stuff is pretty cool, but I’m not really into that info and other sources say it isn’t that complete. I’m not into genealogy so it wasn’t a drawing point for me. I’ve had lots of potential relatives try to reach me, but I haven’t attempted to make contact with anyone.

As for Alzheimer’s and the rest of my health? I do have an increased risk of Alzheimer’s Disease. Double the risk actually. Do I feel bad to get that news? Not really. I always figured that there was a good possibility that I had a higher chance of developing it. Sure, I would have been relieved if my risk was lower than the general public, but now that I know that it isn’t, my intention is totally keep my mind sharp and use it well *lol*. My fear is that I’ll leave my family “stuck” taking care of me and that breaks my heart and I hope that is never the case, but if so, we’ll all be okay and while it won’t be something that I think of all the time it is on my radar and my hope that is that if I ever develop symptoms we can catch them early and deal with it as it comes. I’m sure people have conversations about such things as they age in a relationship anyways. What shocked me most was that I have a much high (5 times risk….a 1 in 3 chance) of developing macular degeneration. That’s something that would never have been on my radar. I know now to keep up with eye exams (which I am very neglectful of doing) and eat lots of vision friendly foods. At least for this condition there are medications that can be taken to help slow/prevent further deterioration if it does become an issue down the road. I also have an increased risk of psoriasis which is not surprising as I already develop this in reaction to the sun every spring/summer if I do not keep my elbows/arms hidden. There is something to this whole genetic thing after all. That being said, it isn’t something that at all says, “you are definitely going to get x, y, z” or “Congratulations! You are never going to get a, b, or c.” Genes are important, but there’s so much more that plays and part in sickness and health so I am very glad that I’ve taken the opportunity to have this testing done and I look forward to seeing what other developments that are made in this area of study over the years!

Flying Solo

Well, I was going to write a post about how laid back everything is now that the kids and I are flying solo for a while. The ability to study whatever we want, the dancing ourselves silly after supper, the lounging on the bed chatting before sleep, the early bedtimes, the playing with our food, my ability to keep the housework under better control. The deal is, though, that this will be one of those Real Life posts instead.

In real life, we probably could do all these things, at least some of the time. My husband is pretty laid back for the most part. It is me who has issues. I get paralyzed by the feeling that I’m not doing enough, that my kids aren’t learning enough, that my kids are too hyper, misbehaved, whatever. Then as soon as someone (AKA as my husband) walks into the house, I get all defensive, even though he isn’t saying anything about the kids or the house or anything else. If anything, he is the one telling me to slow down and just be. I don’t understand why it is so hard for me to feel that people think I am perfectly okay and am doing good enough (and sometimes even better than good). Why do I feel incapable of action in my day to day life? Why is it easier with just my kids? And the main question, HOW DO I ALLOW MYSELF TO LIVE AROUND OTHERS?

I could probably sing talk to the kids if  I wanted to, but around others I feel silly.

My husband could probably deal with the impromptu dance parties.

No one really cares about my house except me.

I could just be silly and authentic.

It would completely change our whole relationship. I wouldn’t need to feel denfensive for nothing. I could just keep going on with my day knowing that my husband doesn’t see the same things that I’m beating myself up over.

Why, oh why, is it so hard, and is it what I want to show my kids?

(I suppose now is as good of a time as any to do some emotional work, eh….journaling anyone?)

10 Things I’ve Learned From My Hospital Experiences

Because my abdomen is still distended and painful and I’m still loosing weight, I’ve spent the last month being poked, prodded, biopsied and scanned. I’ve done two bowel preps (and gotten to know my bathroom rather well). I’ve drank a number of potions and concoctions (some more pleasant than others). I’ve gotten to meet a couple doctors and a variety of nurses and I’ve learned a few things:

1. NOTHING is near as bad at the internet makes it out to be. NONE of the concoctions are near as vile as one would like you to believe. I’ve had to take several. No gagging was involved. In fact, I didn’t find them bad at all.

2. Doctors will be most encouraging and positive when you are doing the simplest tests. “That’s wonderful! You are doing a great job!” after every mouthful of barium but they will virtually ignore you when they are doing more complicated procedures. Don’t even try to talk to him when he is doing a colonoscopy, he’s busy.

3. Doctors hate pain. Nurses hate pain. They hate seeing you in pain. If they are pushing drugs it is because they hate pain.

4. There is a certain amount of pain that one can tolerate. It is okay to take something if it crosses over that boarder between pain and suffering. Pain is okay. Suffering is not.

5. If you are having more than a couple tests, chances are you WILL meet a nurse that you have to be very firm with and that is okay.

6. You will feel really good if you stand up for what you want/need. You are the patient and they are working for you. Be your own best advocate (even if you have to bring your husband to sit in the next room so you can draw on his energy to do so).

7. Most nurses are Godsend. They’ve stroked my hair and held my hand. They talked me down when I’ve started panicking. The are funny and caring. They really are a blessing and I am amazed at the care that they give despite what they have to do each and every day.

8. When you have a big ol’ round belly you will get adoring smiles from older couples in the ultrasound department. Even if you don’t feel like it, smile back. It doesn’t hurt to give your “bump” a rub either.

9.  No matter how nervous you are, there is always someone else in the waiting room that is even more frightened. A kind word and a warm smile can go a long way.

10. Be informed and be aware, but know that medical professionals, for the most part, aren’t out to get you. They do actually want to figure out what is wrong and help you feel better. The more “harden” may have their own life stories and it doesn’t have anything at all to do with you. So breathe, go with your gut, but also be willing to be open and trust.