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!


  1. Yes....I suffer from the hot flashes and night sweats as well. What I'm really having trouble with now is heat in general. I flat out cannot tolerate heat and now that summer is coming....In Texas, which is always intense. I feel the need to ask. Does anyone else get pounding head (not headache), dizzy, weak, sick to stomach and red blotches on skin? Or maybe is it just because I'm a fair skinned redhead

  2. I am way past menopause and night sweats have always been a symptom of my porphyria, just around the neck. I am awakened freezing because the neck of my gown is soaking wet. That should be in past tense, as I have not had the sweats since I have been taking cimetidine (Tagamet) for porphyria (HCP, I think.) Melissa, yes to all your symptoms. I too live in Texas.

  3. Hi Melissa and Annie. I'm glad to know I'm not alone with these symptoms as I couldn't find any information about it being connected to Porphyria...but that's not unusual! Yes, I too get very dizzy and weak when I'm outside in the heat (living in Atlanta where the humidity is so bad it's hard to breathe during the summer!). I often get red blotches on my skin after being outside just a few minutes. I've been very good about sunscreen, SPF 50 sport or higher, and I reapply every 30 minutes, but I still burn. I guess it's just part of my life.

    What is Tagamet? Obviously it's a medication but I'm not familiar with it as I am not on anything for Porphyria. Did your hematologist Rx it? Does it help with your symptoms experienced regularly or is it only when you have an attack?

    Hope everyone is well!

  4. MELISSA!!!!! DITTO! :0 Erin

  5. Yes Jan, here is one more with hot flashes and night sweats.
    And "acne" due to light! Sun and lightbulbs make me tired and swollen and when really sick even acute attacks!
    There is so much more that is due to porphyra that the docs don´t know about...


  6. Yes!! I'm only just making the link between porphyria and night sweats. I initially suspected it was due to my high vitamin c intake (I eat a lot of fruit!) but then my husband asked the obvious...Porphyria? Whether or not there is a link, it's interesting to see we're all experiencing the same thing...

  7. There are a lot of neat Medical alert jewelry you can order online.

  8. After having severe AIP symptoms for the past 8 months, (every 22-30 days for 12+ hours each time) and having every GI test known to the GI department run in the past 3 months, all with negative results I was stunned when the GI dept declared that my case was closed with regard to Porphyria. I decided to grab this bull by the horns. and started reading eveything I could about the disease. I ran across this blog and commented a few days ago on a 2010 post of yours (Jan), about the fact that a hematologist just last Friday, granted me a DNA test. My brother has Cutaneous Porphyria. His DNA has been tested and was positive.

    I am hopeful, at least, to be able to either rule out porphyria, as a possibility, or live with a positive result. I don't do very well with uncertainty. It makes it difficult for me to plan my time. So far I have been lucky to have been home when these attacks have happened.

    I appreciate all of your thoughts and am grateful that you took the time to post them. Most of the same thoughts run through my mind each day but it is weirdly consoling to know others are dealing with the same mind conundrums as I presently am in.

    Yesterday I recognized that these episodes (as I like to call them) are so traumatizing that I am likely suffering PTSD to some degree from having experienced so many. I get teary eyed when I simply think about the 12+ hours of abdominal pain I have had to endure each time without any pain management, right?

    So, I have been reading a bit of your blog each day. I am 59 and want to comment specifically about hot flashes, as you inquired. I have noted a marked increase in hot flashes (though I thought that I was past all of that a few years ago...apparently not. This morning alone, I woke up at 6:45 and have had an unusual series of hot flashes (sweat drips from my brow, whole face is clammy, body hot) close to every hour since 6:45am. That is unheard of for my menopausal history. So unusual that I grabbed a pad and noted the times after the 3rd one. They last a minute or two. I have never had so many in one day before. Since these episodes all started 8 months ago, I was generally getting a buildup of hot flashes, maybe 2-3 per day a few days prior to an episode. That's my info on that topic.