Wednesday, November 30, 2011

I'm Still Here!

Sorry for being MIA. I just needed a break, ya know? I've been enjoying new reader's emails and hope that my responses are helpful. I will be posting soon with before and after pics of my acne...excited to say that I no longer look like a pizza-face. It was bad people.

Hope everyone had a wonderful Thanksgiving!

Thursday, August 18, 2011

Kiss My Acne

I've been suffering from acne for a few months now. Suffering might be a bit dramatic, considering I actually know what "suffering" means now. But still, having acne is no fun. I've never had skin problems like this before. Yea sure I'll have the occasional zit pop up, but never the "A" word. But here it is, and I couldn't hide from it.

So yesterday I went to Dr. Derm for an acne consultation. She is a well respected dermatologist that both my parents go to regularly. My sister and I both saw her as children. My sister for eczema and I had a mole removed. In my early teens Dr. Derm moved into the house next to my parents and I had quite a crush on her eldest son.

Anyway, I hadn't been a patient of hers since I was 9 when I had that mole removed. Obviously a lot has happened since then. Even though I was going to her for acne, I knew we would have to talk about porphyria because it would be necessary to make sure any medications are safe for me to take or use.

Since she does not accept insurance, her new patient paperwork was minimal and didn't even ask for an in-depth health history. The only place I could mention porphyria was under "Are you allergic to any medications? If so please list them." Well technically I'm not allergic to I simply stated "Cannot take many medications due to Porphyria." Short. Sweet. To the point. I handed my paperwork back to the receptionist and was soon in an exam room discussing my concerns to the nurse.

When she got to the allergic medications question, she stumbled over the word "porphyria", indicating she had never heard of it before. Nothing new. I didn't get into specifics with her about it, after all I was here about my acne. She left only to come back a handful of times with a list of questions Dr. Derm needed answers to before she came into my room. Maybe most people would have thought this was annoying, but to me, I was glad to know the Dr. was even reading my chart before she saw me... I've learned most don't.

When it was my turn to visit with Dr. Derm, she came into the room and immediately said as she sat down, "So you have the rarest of the rare." She continued our appointment by asking what felt like thousands of very detailed questions regarding my symptoms and attacks - wanting to know everything. She explained that she treats the body as a one, and although she works with the skin, she understands that it is part of a whole. She was well versed in porphyria - said she has a special interest in it and was sympathetic to my story. Sorry that the medical community had failed for me, and seemed embarrassed by her fellow colleges. Above all, she wanted to make sure I was getting the best care - was happy to hear that a team of doctors at Mt. Sinai had reviewed my case and that I had been evaluated by neurologists, cardiologists, gastrointerologists....

Finally, she looked at my acne. Yes, it is severe and a good thing I am taking care of it. She apologized for not being able to give me any direction or Rx at the time of my appointment. She said she wanted to make sure she knew everything about porphyria, and not just past research or case studies, but what had been published TODAY. And then she said something that I haven't heard from any other doctor - all 50 + of them that I've seen. And she said this:

"You have probably done a lot of research on your own about your condition, and it's probably saved your life. But now, I am your doctor and I want to take that burden from you. It is my job to know how to treat you safely and effectively. You can now take that weight off of your shoulders, and I will put it on mine."

I could have kissed her.

So I left her office yesterday with no medications, Rx, lotions or creams, but something much more valuable. Peace of mind. For I know that she is going to do her research, and I know she will care for me.

On a side note: She said that with my light sensitivity, I should be wearing scarves to cover my neck and chest along with opera gloves to protect my hands and arms when I'm in the car. Windows in cars do not prevent UVA rays from passing through, and those can cause damage to the skin, especially in people with light sensitivity. So I'm using these photos as inspiration. I'm bringing the scarf back!

And the riding gloves are totally in right now!

If Becks is rocking this look, so can I!

Friday, July 22, 2011

Body Pump

I've been going to said class (body pump - in case you didn't read the title) at my local gym where hubbs and I are members. The first time Stevo and I went together. I think he was just making sure I wasn't going to die. The class, seen here, says it will strengthen your entire body. Well sign me up. Ok so 30 minutes in, Steve looks at me - sweat dripping from his red faced chin - and says "I'm done" and walks out never to be seen again...until after class, he didn't go missing. It was intense to say the least.

Let's paint the picture though. The classroom is a large room on the 2nd floor of the gym with hardwood floors (laminate let's be honest), a variety of workout garb in the back such as stair steps, dumbbells, barbells, weights and yoga mats, windows looking into the gym on one side and windows looking to the view of the parking lot (lovely) on the other. To top it off, the fitness model/instructor has her own stage in the front complete with fanny pack microphone system so we can all feel bad about ourselves that we can't catch our breath but she can carry a conversation. Annoyingly, the class is packed every night with women AND MEN prancing around in their spandex. Even grandma in the front has a tighter body than me!

All of that aside, I continue to go. Yes I wear baggy T-shirts and shorts. And no I don't have a bronzed tan to show off. But I diligently go to class 3-4 times a week, lifting the weights that are challenging me...even if they are some of the lightest in the class...and I stay till the end. I do this because I couldn't a year ago, 6 months ago, maybe not even 3 months ago. And I'm proud of myself.

...and I'll let you know that I recently purchased smaller workout outfits!
my new attire

I even got the weight lifting gloves so I look bad ass

Thursday, June 2, 2011

Summer Math

Southern Summer Sun

(very strong sunscreen)


(tent for shade at the pool or beach)


(a fabulously large hat...oh and I'll take the body too)

Hopefully doesn't =

Yea, I don't want to do this again! Now that's taking "farmer's tan" to a new level!

Wednesday, May 11, 2011

The Ride of a Lifetime

I've been noticing my medical ID bracelet a lot lately. It's become part of me, something that's always with me like my freckles, or my new oil burn scar from cooking (that looks just like a leaf)...or my iPhone! But the jingle jangle of it has been louder as it tangles with my watch. The other day I even considered taking it off and putting it away in my jewelry case, after all, it was taking away from the look of my new gold cuff. But my rational brain quickly told me to leave it on - or maybe it was a bit irrational because the silent conversation in my head went more like this:

me: "I love my new gold cuff. It's awesome."
me: "Yea, but the medical ID doesn't look good next to it."
me: "Try wearing the cuff on the other arm." (take off cuff from left wrist and put on right)
me: "Bracelets on each wrist...looks like I'm in handcuffs."
me: "OK, it was better on the other side." (take cuff off right, put back on left wrist)
me: "Hmm, better. But it why not take off the ID?"
me: "Yea, that would look best."
me: "With my luck, if I took it off, I would need it that same day."
me: "True. OK, enough thinking about the bracelet, what am I going to wear?"...

...point being, maybe it's not so rational to have inner conversations such as those. But I do.

Last we talked I was preaching about hormones and Thyroid. It's definitely helped me, but I would say that I'm still only 80% my normal self (on a good day). I've been dealing a lot with hot flashes and night sweats. Anyone else have these? I thought it was hormone related, so I went to my OB/GYN to have my women hormones evaluated...and it's all normal. "Beautiful" was actually how she described my lab results. Good results because there were talks and fears that I might be going into premature menopause...but again no real answers. I was left with that one unanswered question: "Could it be due to Porphyria?"

With my doctor telling me the truth and admitting she didn't know and that anything could be related to the Porphyria, I was left with my only outlet... ask you.

I think many of us look at the situations we have been faced with as "riding a roller coaster". But lately I've been thinking, maybe it's more of a train ride. Some legs of the trip are winding and bumpy and others are smooth and peaceful. Occasionally we are able to stop and rest, reflect on where we've been and where we are going next. We should all enjoy the journey, even the challenging times, because it's the ride of a lifetime.

Told you it looked like a leaf. Hurt like hell, but I kinda dig it!

Monday, March 7, 2011

How Is Everyone?

I haven't heard from some of you in a while and was wondering how everyone's doing!?! Feel free to comment about what troubles you are experiencing. By posting your symptoms or what you aren't sure is porph related or not, we all can learn!

Sending love!

Friday, February 25, 2011

Hormone Replacement Therapy

Hi all. Sorry I haven't been updating very often...I'm not sick anymore so I don't have much to say!

I have been getting a lot of emails asking how things are and if I corrected any of the hormones that were out of normal range. YES! My husband is able to give me pharmaceutical grade nutritional supplements that are 100% natural and whole-food - only available through a licensed healthcare practitioner. What this means is that they don't contain any man-made products, no fillers and don't interfere with any other medications someone might be on. They help boost your own body's ability to heal. So I'm on supplements to improve my adrenals, thyroid, immune system, Vitamin D levels, and digestion. In addition to these, I found a wonderful holistic MD (that also uses the same nutritional products Steve does) and he prescribed Nature-Throid for my hypothyroid. The combo of all of this has changed my life!

I have so much energy I can't remember the last time I was able to go, go, go like this! I feel like the energizer bunny... and I'm getting so much done now that I can work the entire day! On top of the energy, my thyroid is being properly supported and I've lost 12 pounds!

I still have some work to do...I believe we are going to have to address the estrogen and progesterone levels because I'm still having symptoms related to those being low, but again Steve can help my body support those systems naturally. We were originally waiting to see if these would regulate after supporting the thyroid...but it doesn't look like that's happening.

So all in all, things are really good. I'm able to focus on building my interior design business ( and my husband's chiropractic and wellness practice ( It's nice to be able to focus on things other than being sick.

Side note: If anyone out there is interested in learning more about pharmaceutical grade nutritional supplements to support the body's ability to heal naturally, Dr. Steve is available for phone consultations. He has many patients all over the country that he talks to via phone and email, then constructs a personalized plan and ships your nutrition directly to your house. For those of us with Porphyria, being able to take supplements that are 100% natural and whole-food is a true blessing because, as we all know, many medications (even OTC) can cause attacks. His office phone is 770-998-7588. With a wife who suffers from this disease, he knows what's worked for me. We would love to help others too! :)

Tuesday, January 11, 2011

Hormone Panel Results

As I mentioned in my previous post, I recently completed an at-home saliva hormone panel with blood spot to check Thyroid function. Thankfully, my husband is able to order these tests so it's quite convenient.

Yesterday my results came in and as I thought, many of my hormone levels are off. Here's what it said:

-Estrogen and Progesterone are both low
-The ratio of Estrogen to Progesterone is very low
-Noon Cortisol levels are low
-Evening and night Cortisol levels are borderline low
-TSH level is high with Free T4 and Free T3 levels normal

I'm so excited to receive these results. I was hoping that these results would make since of the symptoms I'm still experiencing. My husband was even able to talk with the lab's on call doctor to review the findings. Although she was surprised that a 25 year old has all of these issues, she also said that correcting the imbalances will make me feel much better.

I realize that at my age, having numerous hormone imbalances is strange, but with Porphyria it makes since. If your blood isn't whole, how can your body function properly? I urge everyone to take this simple saliva hormone panel with blood spot. If you are still experiencing symptoms between attacks, it might not be mini-Porph attacks. Some symptoms of hormonal imbalances overlap with mild symptoms of Porphyria.

So go get checked and feel better!

For additional information on salivary hormone panels, check out ZRT Labs.