My Health Project

This post was originally called “Going to See the Chinese Witch Doctor.” Since it’s basically a summary of my current health situation, I’ve created a separate page for it. I’ll try to update this every few months or so.

August 2, 2014

On the health front, I’m sad to say that the SCD went by the wayside for me sometime in 2012-13. I was getting really healthy again, so naturally, I fell off the wagon. I was still gluten-free, but other very bad things, like sugar and GF grains, crept in. Two weeks ago, I endured a rebound reaction after stopping a topical steroid I’d been using the past year to control my rash, and I ended up in the ER with another round of prednisone. My face swelled up so much that I could hardly open my eyes and my skin was just ablaze. Painful, to say the least. Humbled, once again.

How many times will it take for me to understand that I can’t be a “normal” eater? That I’m not a person with a “normal” amount of environmental allergies, a “normal” gut, or a “normal” immune system? That I’m not a person with a reasonable case of atopic dermatitis, but instead a person with a very severe case of it. Well, I’m not sure yet. I’ve embraced the SCD once again and I’m really, really, really hoping that this third time will be the charm and I’ll be able to stick with it for years to come.

The SCD is the only thing I’ve tried in the past 16 years of dealing with this skin issue that has actually greatly improved it, that attempts to relieve the cause and not just mask the symptoms. I don’t use the word cure. But the SCD is the closest I’ve gotten to a cure for my rash. Also, please note, this is not a little rash, people. It’s a life-altering rash. If anyone says to me that I have a little rash, they can expect a fast, hard punch in the gut. You’ve been warned!

All kidding aside, I’m looking forward to several months from now when I’m hoping to feel better after eating right and taking good care of myself. Radical self care, which is part of how I think of the SCD, is a big challenge for me. But it’s what I need to keep practicing.

The upshot here is, of course, that I still love cooking and food. I always will. Cooking has been my longtime hobby and when I can turn around my poor-me attitude, I actually feel nicely challenged by the SCD way of approaching food. For that, I’m extremely grateful.

So, that’s the update. I’ll leave you with one of my favorite parts of Adrienne Rich’s “Diving into the Wreck”, which you should probably click-thru to read right now.

   There is a ladder.
   The ladder is always there
   hanging innocently

 

(What happened next? I’m logging that on a new page: Topical Steroid Withdrawal).

July 2011

I was reading an old post about my progress with SCD and happy to see how far I’ve come (that post is under “November 2010” on My Health Project page). I’ve been on SCD about 9 months now and I’m doing much, much better. This time last year I was unable to leave the house due to my allergies–my face would swell up and my eyes would practically bleed just walking from the front door to the car. My rash was out of control and my digestion issues were raging. Seriously, it was bad. After ignoring everything as long as humanly possible, I got back on the SCD. For those interested in the gory details, read My Health Project page.

So, anyway, it’s nice to see some progress. And not just a little, but a LOT. I’m having a fantastic summer! I’m able to go outside, work in my yard, ride my bike, and generally be normal, which is spectacular. My allergies are way better and very manageable. The rash is under control with just a few problem spots that I continue to work on. My current regimen consists of SCD, acupuncture and Chinese herbs, yoga/meditation, and exercising (bike commuting). My digestion is normal now (meaning that it actually works).

From January through June I cut out fruit and honey and I think that really helped kill off some resistant gut bugs that were causing a lot of heartburn. I’m doing a lot better with that. I’ve started adding back some fruit and honey, and so far, the heartburn only gets me when I’ve clearly eaten something that even a normie would find problematic, like tomatoes or onions. I also notice that if I eat too richly or overeat, I get heartburn. So, apparently, I just have a tendency to get heartburn that I need to be mindful of. No problem.

I continue to only be able to eat a little of the SCD yogurt. If I eat too much, my digestion stops working. For whatever reasons, aged cheese is perfectly fine, but the yogurt must be enjoyed in moderation. I’m hoping this changes someday and I’ll be able to eat loads of it, because it’s one of my very things about SCD actually, especially with SCD jelly whipped into it. Yummers.

Anyway, that’s how I’m doing today. I’ll put this into My Health Project page when I post next because I like having these progress reports for posterity.

November 2010

It makes me want to cry how interested I am in my own and other people’s bowel movements these days, but, there it is, I AM. Very interested. I listened to this podcast on SCD Lifestyle about common mistakes on the SCD. If you are starting the SCD, I think this fairly long podcast is well worth a listen. I’m inspired by these guys!

Definitely a few things were giving me some trouble and I’ve been adjusting as I go. I hadn’t eaten almonds since I got that allergy-food blood test a few years ago that said I was sensitive to them (like, it was off the charts). However, faced with the SCD again, I figured I’d give them a try. Wrong! They didn’t drive me nuts (har har) or anything, but I think I’m going to have to wait on almonds a while longer. I did make an AMAZING almond flour bread, however, that blew my mind. I think I’ll stick with hazelnut flour when I am ready to introduce a nut flour in a few weeks.

Next thing has been juice. I made a crazy brain-mold of jello for Halloween and my rash really did not approve. I was super flared up and I had an image of my stomach bugs just feasting on all the juice. I’m still debating whether it was worth it, however, because the brain-jelly was super good.

Dairy. I’m still on the fence. It seems like I’m fine with aged cheese, and small amounts of the yogurt, but anything beyond that just causes my stomach to go on strike like a Frenchman. Serious work stoppage in there and, ahem, on the other end.

Realizing that certain things were giving me trouble made me remember the dreaded candida. In combination with celiac/gut/bacteria problems ala SCD, I’m fairly convinced I have now and have had in the past a big problem with candida. I’m going to reduce honey, wine, juice, fruit, and anything that might be too sweet for a couple of weeks and see what happens. Pecanbread has a nice page about yeast complicating the SCD here.

I’m also going to try a tsp of baking soda in a glass of water two times a day, lots of lemon juice, and for the actual rash itself (vs my gut), apple cider and baking soda warm baths. Can’t hurt anyway.

At this very moment, I’m completely covered in rash from head to toe and have been feeling like complete…well, crap. My eyes and forehead have been rashy and it’s been hard to sleep. That being said, I’m hoping this is all die-off related and I’m on the (slow) road to recovery because I’m doing the diet faithfully.

Gotta keep chugging!

Fall 2010

Ahhhhh, the bottom. When I hit it, I know it. I hit one recently that was much better than previous bottoms, and extremely educational, but still not a lot of fun. The downside was that I was once again covered in rash and completely miserable. (NOTE TO SELF: Do not forget your scene in the bathroom where you couldn’t move and felt like a burn victim. Do not forget the wracking sobs. Do not forget the desperation. DO NOT FORGET THIS. EVER.) The upside is that I’m back on the SCD and totally recommitted to it. I want to write this post mostly for myself so that I don’t forget the chronology of events. Also, the absurd humanity of it kind of makes me laugh.

So…to review:

  • 1998. Health starts to go haywire in 1998. Health deteriorates with crazy symptoms until I’m finally diagnosed with celiac disease in the fall of 2004. Proceed to strict gluten-free diet.
  • Spring 2005. Crazy blisters on my palms and knuckles all the time. I finally clear this up in the spring of 2009 with strict avoidance of fragrances in any soaps.
  • Fall 2007. Break ankle and ensuing escalation of health issues. Not a good year.
  • Winter 2008. Start seeing acupuncturist.
  • Summer 2008. Start SCD diet.
  • Spring 2009. Feel so amazingly wonderful on the SCD diet that I start to backslide. Even so, I have THE MOST AMAZING summer ever. *NO* ALLERGIES. TONS OF ENERGY. FEELIN’ GREAT, LOOKIN’ GOOD!!!
  • Fall 2009-Summer 2010. Still strictly gluten-free, but way back on grains and sugars. Not SCD-compliant at all.
  • Fall 2010: a very ugly aforementioned scene in the bathroom which I hope not to forget because it will keep me on the SCD straight and narrow forever and ever, amen.

So, that’s pretty much where I’m at today. I’ve been reading other SCD blogs like a maniac, gonna make the yogurt, and am re-embracing and committing to the SCD Way, humbled, grateful, and truly hoping that it can work for me again. Sighhhhhh.

===

The New Food Reality, August 2008

Once upon a time (okay, this past April), my Western doctor told me about something called the Specific Carbohydrate Diet. She said I might try it to see if it would cure my rash and arthritis symptoms. I went home and looked it up online, and to my horror, it was the worst diet I could possibly imagine: no grains, no starchy vegetables, basically just no carbohydrates. It’s a little more complicated than that, but at its core, it’s Atkins on Crack.

Because I had been struggling since November to eliminate just my basic food allergies (eggs, cow dairy, soy, wheat, et al), I couldn’t even really digest (ahem) the idea of eliminating even more from my diet. Truly, what would be left to eat?

Months passed. My symptoms endured. I saw the rheumatologist and had all those blood tests for lupus. I found out there was something called “non-responsive celiac disease” and dreaded I might have it (wherein basically your health problems continue, even after following a gluten-free diet, which I have since 2004). In mid-July, I decided to try no grains just to see what would happen. After the first week without grains, I had a fairly dramatic improvement in my arthritis symptoms. However, by week two, things had crept back and I was swelling again in the mornings. By week four (last week), I decided I’d have to make the final sacrifice: absolutely no dairy (I had been clinging to the thought that I was doing okay with goat and sheep dairy).

I’m on day four of no dairy (in addition to all the other “no” foods), and I have to say I feel all of the following:

  • Depressed – is this really the life I’m leading? A life devoid of any food that even remotely resembles my former life as a gourmet?
  • Hopeful – if this new food reality actually works, I would gladly live this way for the rest of my life.
  • Wrong – see item “depressed” above.
  • Psychologically challenged – say goodbye to making or eating any socially acceptable dishes at office parties, birthdays, holidays, etc. Also, I feel like a Big, Insane, Control Freak who can’t accept the idea that maybe her health is just ultimately beyond her control and maybe has nothing at all to do with her digestive system.

To round out my reading about the no-grain/low carb diet, I read these books:

  • Breaking the Vicious Cycle, by Elaine Gottschall. Gottschall used the Specific Carbohydrate Diet to cure her daughter of ulcerative colitis. The basic theory of the SCD is that certain kinds of carbohydrates (the ones that taste good) cause mucus and bacteria in the intestine, which causes serious digestive disorders in some people. This is very similar to the Candida Theory. I found Gottschall’s book very informative and helpful overall. Many people claim to have cured things like ulcerative colitis, Crohn’s disease, and other digestive disorders using the SCD alone. Some parents are using it for autism. See these Web sites for more info: PecanBread, Breaking the Vicious Cycle, SCD Recipe
  • The No-Grain Diet, by Joseph Mercola. This book doesn’t do much for me because Mercola does not go into the science behind his eating prescriptions. I can’t get behind something I don’t understand.

And then I got these cookbooks:

  • Recipes for the Specific Carbohydrate Diet, by Raman Prasad. This is a pretty good book and definitely an A+ for effort. But I tell you, the SCD would be a heck of a lot easier if one could eat dairy and eggs, which one can’t. There is a whole chapter on eggs.
  • Everyday Grain-free Gourmet, by Jodi Bager and Jenny Lass. Also a good book. Also a whole chapter on eggs.

I’m currently not eating:

  • All my food-allergy foods (see “About” box in right sidebar; and by the way, almonds and almond flour are a huge part of the SCD)
  • Grains
  • Sugar
  • Dairy (homemade yogurt is also a huge part of the SCD)
  • Hot, spicy foods

I’m currently eating a lot of:

  • Honey
  • Peanut butter
  • Meat (animals run when they see me now; I’m surprised my dog can tolerate me)
  • Raspberry jam

So, to recap: I’m on day four of no dairy, and week four of no grains/low carbs. Overall, my rash has shown improvement, but my hand swelling continues. I haven’t had any of the fatigue, brain fogs, and constipation that have really plagued me for the past year. I have a lot more energy on this diet. I recently hiked farther than I have hiked in well over a year (like for two hours!). So that suggests that I’m at least onto something here and maybe not such a Big, Insane, Control Freak after all.

I would love to hear from anyone who has improved a chronic rash and/or arthritis with a similar diet.

===

Easter 2008

Easter won’t exactly be the same this year since I can’t have eggs now. But so much has changed in my eating life in the last few months that it doesn’t feel quite as tragic as it could.

Since I last detailed my experience with the Chinese witch doctor, a lot has gone down. And I do mean gone down, as in, down hill. Turns out I had a staph infection, which I didn’t realize for quite a while. Regular readers saw the gruesome photos of my swollen, repulsive hands. I tried to stick it out with the Chinese poo-water, but eventually I had to call in the chemical bombers. I got a prednisone shot, took an antibiotic for a week and a half, and practically bathed morning, noon, and night in cortisone cream. Things radically improved where my rash was/is concerned.

I was hoping that all the joint pain and fatigue of the past few months was just due to the staph infection. After I finished the antibiotic I had high hopes that I would be free and clear of all health problems.

My allergist/immunologist suggested I go see a neurologist because I had some weird vertigo, headache, and tingling spells that I guess are hallmarks of multiple sclerosis. One thing I learned from this experience is that when people say the words “multiple sclerosis” or “M.S.” to me, I want to crawl in a hole and die, just raise my white flag and surrender. My work is done here, thank you and goodnight!

So the neurologist ran some blood tests and I have an MRI scheduled for next week. The blood tests came back with a positive ANA, but normal for thyroid stuff. A positive ANA means I’m having an immune system response (we needed a test to tell us this?) It’s also something that a lot of people with lupus have. So I need to get more tests to continue to figure out what I have. Believe me, I won’t be surprised if it turns out to be lupus. One thing I’m grateful for about the positive ANA: it proves to me that it’s not all in my head.

You know, it could be anything. The whole thing could clear up next week (my hope). The stuff comes and goes like the weather (in fact, the witch doctor told me to see if the weather was related to the arthritis…like when it rains. And I was like, “But it rains every day here!”) I have to do less when I’m tired and just get through the darn hours before noon, which for some reason is when I feel the worst.

I can see why people who have arthritis, lupus, and M.S. (where’s my hole?!) turn to food for answers, as in: “Does <insert food here> cause my <illness>? Because it would be so easy to fix! Stop eating potatoes? Citrus? Grains? Tomatoes? No problem! It’s the not knowing what causes it and the totally uncontrollable nature and unpredictability of it that is enough to drive a person nuts.

I am so tired of seeing doctors, of getting my INRs, of bruising, of aching, of not knowing what to tell my family and friends, of being a total medical case. Seriously. Enough already, thanks. I’ve had my fill.

So.

For now I remain hopeful and believe that we’ll get to the bottom of it. I’ll be sure to keep you posted.

==

Chinese New Year 2008

I figure since it’s Chinese New Year I should write a little about my experience with the Chinese witch doctor, a.k.a. my acupuncturist/herbalist. Before you get your panties in a twist over my calling her a witch doctor, you should know that at this point, I think she’s probably a deity, and for whatever reasons, she’s chosen to hang out in Portland, Oregon a while to heal Western medical casualties like myself.

I also want to say that I am a science-(read Western)-minded person. I’ve often thought I should have become a doctor.

My story is that I’ve been sick for ten years with an overall immune response which manifests primarily as an all-over body rash, but has also included things like ear infections, conjunctivitis, arthritis-like symptoms, joint pain, mouth sores, constipation, outer-stratospheric PMS, and things I’ve probably just forgotten about by now. There were times when walking around the block was a challenge because my rash sores were so painful.

I think you get the picture, but just to be clear, when I say “rash” I mean a serious, sometimes debilitating rash, not a little poison-ivy-like skin disturbance or something that drives you crazy. I mean something that you want to kill yourself over.

From the beginning, I thought my rash was due to food allergies. But you know how smart doctors are. One in San Diego told me rashes weren’t related to food. I begged for a food allergy test and I was skin patch tested for the big eight. Not surprisingly, nothing was positive: guess what, your skin and the insides of your intestines are two very different places. I experimented with eliminating several different things. I fasted. I kept food diaries, but I just couldn’t figure it out.

Many, many, many doctors, cortisone creams, antibiotics, steroids, and years later, I was diagnosed with celiac disease (three years ago), specifically dermatitis herpetiformis (DH). Pretty nasty stuff. You don’t want it, trust me. Naturally, I stopped eating all gluten. I continued to stay away from soy and I went through dairy-free periods just to see what would happen.

The spring after the celiac diagnosis, I started getting these weird liquid-filled blisters on my hands. Strangely, I had never had any DH rash on my hands ever. So this sucked. The blisters were really itchy, but not as itchy as the DH rash. So I tried to ignore it. Also, DH can take a couple of years to fully clear out its evil little antibodies from the skin layers. I figured that was what was happening…just a little DH antibody clearing. No problem.

In the last year, this thing with my hands got completely out of control. This past fall I started to get all these weird new symptoms, like waking up totally achy and swollen, like I had arthritis. My hands were like balloons and the rash was gnarly. Deep cracks in my skin made it tough to type (a tragedy). I had the worst PMS and UTI ever in the history of the universe. Needless to say, I finally woke up to the idea that this was not just the DH clearing, it was something entirely different.

I went to the doctor and got food allergy blood tested. That came back showing reactions to dairy, eggs, garlic, and almonds. I stayed away from those. I stayed away from all the big eight. I stopped eating all grains and all sweets; every time I ate those I had UTI pain. I got tested for candida and it was negative. I continued the “candida diet” because it made me feel better (I’m still on it, more or less).

When the candida test came back negative, my Western doctor told me she just couldn’t help me anymore. Enter, Chinese witch doctor.

Me and needles don’t exactly get along. We have a long, sordid history together, the details of which I’ll spare you. The idea of getting poked all over with needles sounded like as much fun as a square dance in a chemical spill.

But I went to see the witch doctor and I’m so grateful I did. She has me drinking the nastiest poo-water known to mankind. She calls it “herb tea,” which I think is really quaint. I boil up these twigs, roots, and tree bark in water and choke back the resulting decoction three times a day. At first I went to see her once a week and got poked all over with needles, but now that I’m improving so much, I am seeing her every other week. I’ve seen her a total of five or six times now. She cleared my UTI and constipation right up, but the rash is more stubborn. I figure I’ve had this rash a long time so I have no expectation it’ll disappear overnight.

In the meantime, I’ve learned that my hand condition is called pompholyx or dyshidrotic eczema. This is a great site for sufferers, which also contains my all-time favorite (Western) medical rant. The person who runs this site is a genius because she or he figured out that putting 40-volume peroxide on the rash makes it feel a hell of a lot better and heals the wounds faster. I’ve been doing it only for a day now since I just recently discovered this site, but so far, so pretty darn good. If my fingers fall off as a result, that’ll be just as well. (UPDATE: an astute reader let me know that my all-time favorite medical rant and great site for sufferers links no longer work. Sadly, I don’t know what happened to these sites. For other resources, please see my reply to Julie in the Comments to this post.)

The overall immune response may be pre-lupus or any other of the multiple immune disorders, though I never have had the face rash that is a dead ringer for lupus.

Or, of course, I just have too much heat in my spleen and lungs, and my First and Second Burners are all messed up.

Tonight I told the needle-poker that my rash first started on my right hip. She said:

“What was happening in your life then?”

Me: “My boyfriend had just died, suddenly and unexpectedly.”

Dr: “Hmmm. Your right hip is where your meridians are for your gall bladder, which is the site of all emotions. So something traumatic happening in your life like that…it would make sense” (okay, I’m paraphrasing because her English isn’t the greatest).

Me: “Yeah. I think that is what started all of this.”

What I know is that my Chinese witch doctor has the best bedside manner of any doctor I’ve ever seen. She actually strikes me as a real “healer,” someone who actually wants to heal people (vs. drive a fancy car and live in a big house). She seems to genuinely care about whether or not I’m improving and about my overall health. I spend at least an hour in her office each time I see her. I get a conversation about my health, noting any changes or improvements, my pulse taken, my tongue examined, and my body poked with needles, all for the bargain price of $100, which includes herbs to make the “tea.”

The best part is that I’m getting better.

Happy Chinese New Year, Doctor C. May you live long and prosper.

P.S. I found this great article about how to heal pompholyx with Chinese medicine. Scroll down on the page to the article by Mazin Al-Khafaji.

Chinese Herbs in Pot

The “tea”

11 responses to “My Health Project

  1. This is an amazing story! I am so glad that you are sharing it. The word really needs to be put out about alternatives to western medicine. My mother in law used to go to a “chiropracter” who would ask her where it hurt, then ask her what was going on in her life. She would start rubbing and pushing…and talking. It wasn’t always something current, sometimes she would hit a certain spot while talking to her and a flood of emotions from the past would come pouring out, even memories that she had forgotten. Different areas of the body represent different areas of the mind. I don’t remember most of them, but I know the lower back is financial worries lol! (No wonder so many people have lower back problems) Best of luck to you in your continuing journey.

  2. marilyn

    hey cuz……sorry to hear things are still really crappy for you…..i know you have probably read everything……..but i have come across a book titled “Restoring your Digestive Health”, by Jordin Rubin and Joseph Brasco…….i found it to be extremely interesting and most helpful…….give it a try……love ya…..

  3. mjennings26

    Hey M,
    I love when totally random people like my own relatives show up on my blog! Thanks for commenting. I will definitely check out that book. What have I got to lose?

    Do you know anything about the Specific Carbohydrate Diet? My Western PCP and a friend of a friend have recommended it. The friend of a friend says she has basically cured her Crohn’s with it. Maybe everything does come down to the gut.

    Anyway, I will check out the book you mentioned and let you know if it helps.

    Thanks for reading! And send me your favorite recipes!

  4. nepeht

    In skimming over your health story, I felt touched in that I was almost afraid to read too deeply because each time I allowed myself to focus on a word or phrase I almost always saw something reminiscent of my health journey about 8 years ago. All I can say at this point is that I hear you and that though I don’t know you, I am proud of you for being so introspective and so genuine in your posts.

  5. mjennings26

    Thanks so much for stopping by, Nepeht, and especially for commenting.

  6. Amber

    Thanks so much for sharing you story. It is encouraging to see someone making progress. I spent the last year working out my issues and am still refining what the heck is wrong with me. I know I have DH and am very dissapointed that it did not just go away when I eliminated glutens. I am definitely in the anger stage of this process (denial did not go well at all!)

    I look forward to reading you recipes and following your progress!

  7. mjennings26

    Amber,
    Thanks so much for the lovely note. I keep meaning to update this page with my current health status, which has improved over the past few months on the SCD. Hopefully I will find some time over the holidays to write more about my experience with the SCD.

    Happy holidays!
    Melanie

  8. Kat

    Oh my gosh! I have never known anyone else with Dermatitis Herpetiformis, let alone another SCDer!

    Strangely enough I got DH after already going gluten-free. It was almost as if I became more sensitive to gluten even though my digestion improved. I don’t have any official diagnosis, but I confirmed it for myself this past May when I had at least a few spoonfuls of wheat.

    The rash is unbelievable and horrifying. Anytime I get a little red bump I start having panic attacks that it’s the rash again. Sometimes I even have nightmares about it. I’m not sure if it’s possible to have post traumatic stress disorder from a rash, but it sure seems like I do!

    SCD has been working at keeping the rash away. The first two years I seemed very sensitive to gluten cross-contamination. Now I seem to be ok with tiny amounts (although I avoid it like the plague) and will only get the rash if I actually ingest a noticeable amount.

    It’s very nice to ‘meet’ you! I hope getting back on SCD will bring you lots of relief.

    Ok I have to ask, have you ever found anything that helps with this rash? I’ve tried so many things topically that do absolutely nothing.

    Kat

  9. mjennings26

    Hi Kat!
    It is *amazing* to “meet” another kindred spirit. I have been reading around your blog for the past week and am loving it. Not that I want to see others suffer, but it is so comforting to know someone else truly understands the challenges. Your experience in China with the dumplings was especially funny, sad, absurd, and hopeful, all at once. Thanks so much for it and I look forward to following your progress!

    Topically…hmmmm. Some things I use that help include ice and wet cloths. Ice right on an aggravated spot helps it stop itching and burning so urgently. And a wet cloth laid on the rash for a half hour to an hour have also helped calm it down.

    For the weird blisters I had on my hands (which is a different rash for me and I’m now completely rid of by avoiding fragrances in products), I found the direct (and painful) application of 20 to 40-volume hydrogen peroxide worked wonders for drying it out quickly and taking away the urgent itch/pain. Of course, doctors would be *horrified* by this, so you didn’t hear it here!

    Take care and I’ll be checking in! Best of luck!

  10. Julie

    The great site for sufferers of pompholyx or dyshidrotic eczema isn’t working. Could you send me the link? if it still exists…

    Thanks!
    Julie

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