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!!!

A Big Thank You

I just wanted to express my gratitude to the people out there that are reading this crazy blog. As I've typed before, I started so I didn't have a major melt down...my husband was already juggling my many minor melt-downs and a major one might have been the straw that broke the camel's back so to speak.

In the last year or so that I've been sharing my story with the internet, I've gotten really sick, lost my memory, designed and planned my sister's wedding (thankfully I didn't ruin it by passing out during the ceremony...but it was close), can't remember 2009's holiday season, had a battle with almost 30 MD's (see previous post about my thoughts on "MD"), survived a terrible trip to Mayo, coming back around to an old Dr. who actually cares and probably saved my life, and finally getting back to myself. It's truly been a Royal Pain In My Ass.

Through all of this though, I have this outlet and a hope that I'm helping someone else out there. In response to my venting, you readers (which I'm still amazed people are reading my blog!) have been so accepting. I love receiving emails from people that have stumbled across my page, felt a connection, and shared their story with me. Not only are we not alone, but the information we share with each other on diagnostic testing, types of porphyria that aren't commonly known, and ways we are staying healthy is invaluable. So thank you. Thanks for reading my words and stories, and I know you're laughing at my pictures too! But most of all, thanks for sharing your story with me and being there to answer my questions.

:)

May Day, May Day!

Yesterday I had a check-up appointment with Dr. Premier. Due to my last doctor's appointment with the M.D. (see previous post) I took my husband and my mom as backup.

The last time I talked to Dr. Premier was right after he had a phone conversation with Dr. Flippant. It was obvious that Dr. Flippant had voiced his opinions about my condition and it was swaying Dr. Premier's view. He slowly changed his mind from a rare type of Porphyria to "not tolerating hormonal changes". I can hear what the phone call must have been like:

Flippant: "Oh come on! Can't you see she's pulling you on a ride?"

Premier: "No, I really think she has Porphyria, or at least something that is causing her to be severely ill."

Flippant: "No way. She's a hormonal 20-something year old girl. She just needs to get a life. All of her tests have come back negative. Send her on her way."

Premier: "Well her tests have been negative, maybe you're right. Maybe she's not tolerating hormonal changes that happen in your 20's...."

Or at least that's how it goes in my head.

Anyway, so I was a bit concerned going in to see him so I took necessary precautions... such as having backup, printing out calendars and writing in all of my symptoms in each day I experienced them (thanks to my OCD personality, I keep a journal of this), a list of questions, and a new attitude.

The appointment started of shaky at best. He began by reading over my calendars I handed to him, asking appropriate questions, and then started to give me possible "syndromes" for each one. I was starting to get upset, and finally said "so I have like 10 different syndromes?" Thankfully my mom stepped in and was my voice for a few minutes as I haven't mastered the art of making your point gently.

In my mind I felt like I am the owner of this ship and my captain just jumped! Surrounding us, treading water, are all the other doctors I've seen yelling at him to abort. May Day! May Day! We're going down...

Mom interrupted my mental naval battle by saying that "we are not convinced that Jan doesn't have Porphyria." That it's too coincidental to have all the symptoms of one rare disease than to have 20 or so different syndromes. That we are thankful for all he has done and we realize that at this time there isn't more he can do... but that we were totally fine with that. In fact, I am doing well for the most part, a different person than I was one year ago, and that I'm going in the right direction.

Seeing El Capitano jump, we had to throw out a life preserver! Thankfully he grabbed hold and we hauled him back on board.

Dr. Premier agreed that it was more probable that I had Porphyria, just a type or mutation that hasn't been able to be identified at this point, due to lack of research being conducted on Porphyria. We ended the appointment (after an hour and a half) by saying that we will continue under the assumption that I have this rare disease, all medications will need to be cleared for safety, and that he would not "officially" give me the diagnosis due to lack of medical evidence and for insurance coverage purposes. I'm fine with all of this and thankful he's back on my ship. I'm not sure where we're sailing to, but we are going in the right direction.... finally.