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!

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!

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!

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 (www.janmichelleinteriors.com) and my husband's chiropractic and wellness practice (www.eveningredchiropractic.com). 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! :)

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. http://www.zrtlab.com/

Happy New Year!

It only seems fitting that I ring in the New Year with a sinus infection. It's just been that kinda year. To give a quick update, I have been doing very well... although this causes difficulty when I have nothing to talk about on my blog! I decided to look into my hormones and make sure all of the levels are in optimal range. Don't laugh, but Suzanne Somers has wonderful books that explain the hormones of the body and their functions. Many of my symptoms that I'm still experiencing can be caused by hormone imbalance. So just to look at everything, I did a saliva hormone panel and are awaiting my results.

Other than my new sinus infection, I've been able to return to all of my former activities - sometimes with a bit less energy, but I'll take it! I wish all of you a HEALTHY and safe New Year.

Where To Go From Here?

On the road to a Porphyria diagnosis, I feel like there are a lot of these signs!

Every day I feel better, which after the year I'vehad is amazing in itself. I recently told my mom, "A coupleof months ago I was happy when I only had a few bad days, now I'm down tobad moments." I've been off of birth control pills (estrogen) for 9 months now... and finally I'm able to do what I want, when I want and still feel good. My old friend Vertigo still visits, but she doesn't stay as long (used to be days...sucks) and isn't as strong. The other day I had a few hours of severe nausea, carrying a plastic bag with me just in case. But that's really my main complaint at this time. Yes, there are other porph things in my life: clusters of small blisters on my fingers and toes, edema (but better since being on a diuretic), headaches, black spots in my vision occasionally.... you get it. But for those who have survived a porph attack, or those that have witnessed such attacks, when you're down to these small complaints, it feels like a victory!

However, with feeling better comes a new problem; do I continue to search for my answer/diagnosis? Part of me says just wait to see if you get sick again and if you do, deal with more testing at that time... after all, that's when my levels will be elevated again. But the other part says do the work - research, phone calls, time on the internet doing crazy google searches trying to find something I haven't already read, seeing new doctors, reading over my stack of medical records again and again - while I'm strong and have the energy to do so.

Many of you have emailed me personally and shared your story. I would say that very clearly, the majority have seen a hematologist. I, on the other hand, have not. It might be the only doctor I haven't seen in the last 2 years! The reason I haven't seen one is because Dr. Premier wants me to see someone who has treated a porph before... well good luck there. Even living in a large city, he hasn't been able to find someone. Many of you have offered to send me your hem's contact info to do a phone consultation, and I'm sorry if I haven't answered you, it's just that I don't really know what to do right now.

So the question is, do I find a hematologist to see/consult with now or just live life and cross that bridge when I come to it? This is not a rhetorical question, I would actually like someone's advise!!!