Duke's 1st Birthday

Happy 1st birthday to my big, sweet boy!  We celebrated last night because, unfortunately for him, he had his neutering appointment today.  Yes, on his birthday.  I felt bad but it was the only day available.  Anyway, he was not having the birthday hat and only allowed it to stay on his head for a second - just long enough to get a quick picture.  We went by our favorite pet boutique (we sound crazy) and got him a dog cupcake which, duh, we had to have a candle for. 

... oh, and the banner.


...and some new toys.

And we're having "family" holiday pictures taken soon so I HAD to get him some new Christmas collars...and maybe a holiday sweater too.

Halloween 2013

We live in suburbia USA so let's be honest, nothing super exciting happened.  Lots of little kids dressed as superhumans, princesses, monsters....what ever happened to making your own costume?  When I was a kid (wow, that makes me sound old) I would spend weeks crafting my own costume or going through my mom's closet and piecing together something to wear.  Now, it seems like everyone just goes to Walmart or Target or whatever store is near you and picks out the "all in one" costume.  I'm sure it's easy for both parent and kid - and no I don't have kids so I'm sure I'll be doing it at some point myself - but where's the creativity in being the 17th Power Ranger to come to the door? 

Anyway, I'll get off my soap box and share some pics of our simple, quiet Halloween last night.  I pulled out the tried and true poodle skirt and pieced together a 50s outfit and Steve went for a large pumpkin with a black, curly wig (I don't know what he was really trying to do) and little Duke spent his first Halloween by our feet as the most adorable bumble bee.  We weren't really sure how Duke would react to all the kids coming up to him, especially all dressed up, but he was excellent.  We passed out candy and he gave out kisses to all the little hands that reached out to pet him.

Hope everyone had a safe Halloween!

vloging

I've been really into vlogs lately (video blogs) and yes, it took me an embarrassing amount of time to figure out what a "vlog" meant.

I just feel like when you get to watch the person talk to you and see their mannerisms, hear their voice...you feel more connected.  Sooooo, I've been thinking about incorporating some videos here.  I have no idea how to make them look professional - or even decent for that matter - ok, I really have no idea how to do it at all and I'd have to spend some time watching videos on how to make videos (more embarrassing facts about me), but I think it could be nice.  Maybe I could get into the habit of doing a video a week (#wishfulthinking).

What do you think?  Would you like to stop reading my rambling thoughts and watch them instead?  Is anyone out there?  There have been no comments in a long time, so maybe I'm the only one left...

Non-toxic Make Up Artist, Katey Denno

I was cruising around the internet today and after a trail of clicking one link to another, found myself watching a great video segment with celebrity makeup artist, Katey Denno (no I didn't know who she was before 2 hours ago).  But I really like her and her philosophies, so check it out.

 http://live.huffingtonpost.com/r/segment/green-beauty-products/521ce907fe344411dd000122

After watching that, I had to learn more about Katey and found that she is kinda big-stuff (her clients include Christy Turlington, Felicty Jones, Amanda Seyfried, Olivia Wilde and Olivia Munn to name a few) .  She even has a blog which has lovely non-toxic/organic products that she uses and tips on how to get that "red carpet" look.  Thanks Katey! (check out her blogpost on how great organic coconut oil is for you...and then remember that I told you first!)

http://www.thebeautyofitis.com/

Here's a pic of Katey, a beauty with amazingly natural red hair (jealous).

Porph Products

I thought I'd share some products that I've been using and have been good. 

Organic, unrefined coconut oil - I use this as a moisturizer on my face and as chapstick.  It's also great to control hair frizz, anti-fungal (especially for athlete's foot) and for cooking.
It's so good for you and has no chemicals!  Remember, everything you put on your skin gets absorbed by your body so watch the ingredient labels on your products too, not just food.  I think this is the brand I have right now....you can get whatever you find in your local store but make sure it's organic and unrefined.



RMS Beauty - "An original, pure, organic color cosmetic line created by Rose-Marie Swift.  Based on living and organic principles it is created to hydrate and illuminate, vital radiant skin. Consider it skincare with mineral color-giving make-up a whole new meaning."  Doesn't that sound amazing?  I have an order in right now and can't wait to get that package in the mail and start using this line of cosmetics.  My dear friend turned me onto it and loves everything she has from RMS.  I'll let you know what I think soon!


http://www.rmsbeauty.com/shop/index.php


Glycolix Pads - I've been using these for a while to combat my acne.  Dr. Derm sold these in her office, but she recently retired (boo!) and so I've had to turn to the great shopping mall of the world, or what the young folks call the "internet".  Not surprisingly I can buy them cheaper which makes this bargain hunter real happy.  Yes, it's chemicals but 1) I haven't had a bad reaction to them and 2) they work.  It comes in different strengths but I've always used the 10% glycolic acid/2% salicylic acid.  Use what works, y'all - acne aint cool.



Cetaphil face soap - an oldie but a goodie!  I've used all kinds of face soaps, especially when I was trying to get my acne under control.  In the end, this one is working just fine (with my glycolic pads and coconut oil).  It's so cheap too and I can pick up a bar anywhere which is great when I forget it when traveling.  I personally like the bar soaps - probably because I feel like it lasts longer and I can get a huge package of them at my big box store.  Yep, I'm cheap.


http://www.cetaphil.com/products/cleansers/



Glass food storage containers - Dr. Derm told me that all plastics are harmful to your body and that I should go glass....so I did.  Steve and I also use all glass water containers I purchased at Whole Foods.  They are great and have a colorful rubber protective sleeve around them for accident prone individuals like me! (literally ran into a wall the other day at work)

  
Nugo Bars - in one word- AMAZING!  These things are the best.  I was shopping at Whole Foods the other day and they had samples so obviously I stopped and ate all of them  tried a few.  I'm not dairy free or gluten free or anything free, but I do know that many porphs have had improvement going gluten and/or dairy free.  It's something I've been thinking about but haven't taken the plunge yet.  In any event, I've had my eye out for foods that are gluten and/or dairy free and this one hits the mark.  Not only are they GF and DF, but many of their products are vegan, which I'm also not but it makes me feel like a good, nice person when I eat something that is.  Then I go home and have a juicy steak for dinner.

The bars I scarfed down sampled were the Nugo Dark and I purchased the pretzel ones.  They are seriously like candy bars.  Go get some.

http://www.nugonutrition.com/



These are some products that have been recommended to me but I haven't had the chance to try yet:

African Black Soap - Together, the deep cleansing of African Black Soap blended with 100% Shea Butter deliver an unsurpassed body cleansing experience that exfoliates without stripping skin of essential moisture. Oats and Vitamin E in the formula soothe, condition and prepare skin for moisture. Our traditional African Black Soap recipe Contains palm ash, plantain peel extract, tamarind extract and papaya enzymes.

No Parabens, No Phthalates, No Paraffin, No UREA, No Propylene Glycol, No Mineral Oil, No Synthetic Fragrance, No PABA, No Animal Ingredients, No Petrolatum, No Synthetic Color, No DEA.

http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=7Q-1001#.UiaoPDaUSZs



Raw Organic Unrefined African Shea Butter - this stuff is apparently amazing and I'm totally missing out by not having it yet.  Read this short article on all the benefits....including sunscreen!  Score!
http://www.naturalnews.com/024157_butter_shea_skin.html




http://www.ebay.com/itm/RAW-ORGANIC-Unrefined-REAL-African-Shea-Butter-16oz-1Lb-/120705333084

***I am not a paid endorser of any of these products.  I just use them, like them, and felt like I should share them.  If you are in with any of these companies and can get me a paid endorsement, I'm not above that***

Meal Planning for Health

I've been horrible on my meal plans lately ("meal plans" is a nice way of saying diet without having to use that dreaded "D"-word).  Last year I saw a dietitian to help me maintain health and loose extra weight I put on during my 1.5 year battle through my Big Attack.  She and I talked multiple times and she was great at doing research and learning about porphyria.  After coming up with a plan, 6 weeks into it I dropped 15 pounds and was feeling amazing!

So here I am a year later and I've lost my motivation...gained 10 pounds....and am having issues with my porphyria that I haven't dealt with in a while.  I know I need to be diligent about what I put into my body, but to be honest, it can be exhausting to meal plan, shop organic at a store 20 minutes away, cook every night and pack a lunch every day for work.  And lets not even start on measuring out every item of food!

But it works.  It's worked before for me.  I know it would work again.  So....what's holding me back?  Am I being lazy?  Am I making excuses for myself?  Where did my motivation go?

Beyond the cosmetic part of gaining/loosing weight, this is about my health so I need to put that above a tasty brownie or chips that I know are filled with toxic chemicals and have no nutritional value.  I'm not only dealing with the issues of last year, but now I'm also having additional symptoms and recent blood work showed I am insulin resistant (the first step to diabetes).  Although I'm a small person, my doctor explained that anyone can have diabetes even if they are in an ideal weight range.  So now I also need to be watching my sugar intake (which I love!) so that my resistance doesn't become more....and I could even reverse it.

The knowledge that for many porphs their symptoms increase and/or become more severe as they age is frightening.  However, I can do something about that by taking care of myself NOW and hopefully I can stop - or at least slow down - my symptoms.  It's not easy, but it's my life so isn't it worth it?  And if others don't understand my "crazy diet" or say things like "oh it doesn't matter, you can have this just one time", well they can F-off.  It does matter.  I do matter.  And having my health is worth saying "no" sometimes.

I'll try to keep you posted on how it goes...

The Dog Days of Summer

When I'm not sick - or have your husband's surgery to post about - I don't really think about blogging.  However, I feel guilty for only sharing about the bad times in my life when, in reality, most of my days are not affected by porphyria.  So here's a little about what's been going on lately (or since September and my last entry....has it really been that long?  I'm a horrible blogger.)

Well, there was the usual:  Halloween, Thanksgiving, Christmas and New Years.  All uneventful.  We stayed at home for all holidays and didn't do much.  Passed out candy to the neighborhood kids, ate a lot of turkey at my parent's house, opened presents, and once again didn't stay up long enough to see the ball drop and ring in the New Year.  It sounds pathetic, but I like my sleep.

The BIG NEWS is that Steve and I welcomed a baby into our family!!!  No, not that kind....better! 

Please welcome Duke, our adorable English Cream Golden Retriever.

Can you even handle how adorable he is?  I know.

He's now 8 months and we are absolutely in love with him - although he's got some crazy hormones going right now since we are waiting till he is a year to have him "fixed" (don't tell him). 

He's been going to work with us since the day we got him and during lunch we take him to the park to run and play.  My thought was to have him become a therapy dog with the children's hospitals and assisted living facilities nearby so we are working on his training.  He's such a sweet boy.

So that's what's up.  Ever since Duke entered the picture, our lives have revolved around feeding him, taking him out, playing with him, training him, telling him he's not allowed to eat the furniture, telling him he's not allowed to play in Mommy's drapery treatments that she loves so much, telling him he's not allowed to bark at the tree in the front yard all day, telling him he's not allowed to bite the neighborhood children, telling him he's not allowed to steal socks out of the dryer, telling him he's not allowed to take Mommy's underwear out of the laundry basket and parade them around the house like a found treasure.....

New Settings

Every week I get at least a handful of requests to share the porphyria article mentioned on my blog.  First, I want to apologize for not getting back to so many...I just don't have the time I wish I had to respond to everyone immediately. 

Due to the high demand, I've changed the settings on the article and (assuming I did it correctly) the article should be available to the public.  I hope this helps and allows everyone access.  I've tried going back and finding that article again on the internet, but I just can't seem to locate it! 

Happy reading!

Karma

Nearly one year ago, in October 2011, I was at a neighborhood baby shower.  Being that I don't have children these events are always something I loathe going to.  Who doesn't want to spend their weekend playing games like Pin the Diaper on the Baby, how many sheets of toilet paper does it take to go around Amy's belly, or (my personal favorite) guess what candy bar has been melted into the diaper so it looks like baby shit?

So the torture finally ends and I think I'm going to spend the rest of my Sunday afternoon relaxing at home.  I get one step into the house, literally one step, and my husband - who has spent his whole weekend at a continuing education seminar - jumps up from the living room and says "I can't see!  I'm blind!"  Being the compassionate wife that I am - and with everything I've been through I find everyone else's "small medical issues" quite trivial - I say "ya, ok...I just had to go to a baby shower.  So beat that." 

Well he did.

He was in the last day of the seminar when a "moon-like shadow" came into his vision and within a few hours he had no sight in his left eye execpt a small sliver of top periferal (example: if he was looking straight, he could only see a tiny bit of the ceiling).  Becasue he is the calm before the storm in our relationship (yes, that makes me the storm...I tend to be dramatic) he was searching the internet on what needed to be done and what might be wrong while I frantically called my mom, hysterical that my husband is now blind.  Steve and I must have gone three rounds debating on going to the ER or waiting the night and calling his eye doctor on Monday morning for an office appointment.  In the end, I won...obviously.

We were concerned it could be a detached retina - and WebMD says that can be an emergency situation.  So off we go to the best hospital in Atlanta for eyecare, Emory.

We arrived in the Emergency Room in the late afternoon, and surprisingly was wisked back to see the nurse and begin processing immediately.  Apparently when you have something more than "pain" you get the attention of the medical staff.  I should keep this in mind...

As we sat in a cell of a room, if it can be called that, off the main hall, the admitting nurse asked generic questions for the mountain of paperwork to be completed before we could get a room in the ER.  Questions like, your full name, address, age, height, weight, blah blah blah.  Then she asked him to come into the hallway with her, and it is here, in this long dim hall that my husband got to experience the competencies of the medical community for himself...

Steve (standing at one side of the hall - me, watching from a chair)
Nurse:  "Ok, hold up the eye blocker on your right eye and read what you can off the chart."
Steve:  holds up blocker.  "I can't see anything."
Nurse:  "It's ok, jsut whatever you can read off the chart."
Steve:  "I can't see anything.  I can't see a chart."
Nurse:  getting annoyed "Just read the top letter."
Steve:  "I can tell you what the top few letters are just because I know the chart, but I don't think that's the point of this test.  For testing purposes, I can tell you that I can't see the chart and I can't read any letters."
Nurse:  large sigh... "Well tell me what you can see then."
Steve:  "I can see a small bit of the ceiling if I look straight."
Nurse:  "What if you flip down the pin holes and look through that?"  (comes over and flips the eye blocker so now the person can look through tiny pin holes)  "There, now read the chart."

I wanted to strangle her.

Eventually we passed the test  - or didn't - and got entrance to the ER room, which was quite nice and even had a flatscreen TV where we conveniently watched football while waiting for the doctors.

An energetic young female doctor first came to examine Steve's eye.  She confirmed with an ultrasound (performed over his eyelid) that he did indeed have a detached retina and the retinal specialists would need to be called in immediately as it can be a vision emergency.

We watched football.

And just like he did for me, I was there for him...taking pictures

And got his version of the now famous "look, I'm fine" picture.

Nearly 8 hours later, many football plays watched, we left the ER after scheduling emergency surgery for the following morning.

They make you put the "YES" sticker over the eye to be operated on.

And off he went into the OR for this surgery (warning: the video linked is graphic)

To answer your question: yes, we did watch it before his surgery and it did not help with the nerves!

Two hours later, he was as good as new.  Maybe even better becuase he was totally high on drugs and making my mom and I laugh hysterically as we waited for him to be discharged.

The morning after surgery the doctor saw him in her office and removed the bandages.  His eye was really swollen and had some dried blood, but was doing well.  Amazingly, he could already read the large letters on the dreaded "chart" even through all the gunk in his eye!

He had to sleep with the patch over his eye so the buckle didn't move.  He hated it and whinned about it like a little girl.  Again, becuase I'm so compassionate, I put extra gauze arond the base to make it more comfortable and lent him a hairband to help keep it on through the night.  Wife of the year right here!

He got to rock these awesome shades for the next month, too!  He even wore them inside the first few days becuase the sunlight was too bright.

Now he gets to wear really big glasses!

JK, these are a sculpture!

Sorry for the delay...

Sorry for the delay...it took a while to find out how to properly post since the link is no longer valid.  Hope this helps!

https://docs.google.com/open?id=0B1DXH995HViAVjZ5c1Y1clZNWms

Article

I figured it out!  To all of those out there who want a copy of the article I talk about in this post, I will scan and put it up on the blog tomorrow.  Thanks kind readers!

This is what I've been doing

Ok Porphs. I know I was all "oh I'm still here" and then I wasn't. Well, my life is boring what can I say...literally, what is there to say when you have a blog and there's nothing going on in your life? So to catch up... it's been over a year since I started having bad acne. I introduced everyone to Dr. Derm who told me to wear opera gloves and scarves - which I did for like two weeks and then haven't since, but I did totally stock up on scarves from Target which I admire daily as they hang in my closet. Dr. Derm also let me in on a little secret - that truck drivers have a thing for opera gloves. Who knew? So long story short... trying to get my acne under control has been difficult to say the least. It's been a process of trying this cream, then that gel, then these cleaning pads... You get the picture. About a month ago I had had it and asked her to take it to the next level. So she prescribed me Minocycline, a common antibiotic used to treat moderate/severe acne. Great! Nope, not great. The ONE TIME that I didn't double check my new medication, yes you guessed it, it's not good for porphs and I got sick. Within 48 hours I couldn't stand straight, nausious, had dark pee, outbreak on my back and went outside to pick a few weeds in our yard and got a huge, itchy rash on both arms from sun exposure. Obviously I stopped the medication and started to feel better. I will say, that Dr. Derm took total responsibility and apologized for making me sick (gasp! Yes, take a minute to read that again - a doctor who apologized for making and admiting to a mistake!) She now has me on a different antibiotic that is not making me sick and is doing a good job of clearing up the zits.

Here are some pics of my reaction to the minocycline - yes, very sexy:

It's hard to see in the pics, but the rash is made of tiny little red dots. 

Much more importantly, I decided a few weeks ago that being blonde was boring and that I needed to spice things up...so I went red.  I talked to my hair stylist about it first and he agreed that I had "the coloring" for it - meaning I'm pale and have light eyes - and so we did it. 

Here it is red... and I'm laughing becuase I feel like the Joker.

I admit that it doesn't look bad in this picture - but trust me it was bad.  And look how the hair color highlights the red in the acne.  Just what I was going for.

So 48 hours later I had them "fix it" back to blonde.  Which it really isn't right still so I'm going to a friend's salon later today and hopefully they can fix it... better.

So that's what I've been up to.

One last thing - I think that recently my blog has been posted on a website or conversation board or something because I've had all kinds of new readers - which I love!  However, many of you are emailing me asking for a copy of an article I talked about...can someone be more specific?  Let's all remember I have a horrible Porph memory and going through all previous posts to try and figure out which one yall are referring to sounds like a nightmare.  If I can figure out which article you want - and find it again - I'll be sure to post it on this blog!