Two years, four doctors and one crazy later.....

This story starts a little over two years ago. For those of you who know this part already, feel free to allow your attention to wander until I get around to the new facts that you're looking for. A few months before The Bean was born I started having some little problems with my health, namely my hips were sore (but what pregnant woman's aren't?) and I started to have little panic attacks here and there (well, yeah, I'm about to give birth). I brushed them off, but in the end they ended up taking Ely by C-section three weeks early as my body "just wasn't coping well" to quote the OB. The problems got a little worse after she was born, especially the mental issues, but I figured PPD was to blame for a lot of that and it would get better. It didn't.

Fast forward a year. I'm now having regular panic attacks and am having trouble simply functioning. My legs randomly turn a splotchy purple/red color at intervals. I've lost 70 pounds - in just the last 4 months. My hips, knees and back are becoming increasingly painful, and I've started getting headaches like you wouldn't believe. Some days I don't even want to get out of bed - and don't. My in-laws are telling me I look anorexic, Evan is pushing and pushing me to go in to the doctor, and I, true to form, am giving them all withering looks and trying to pretend that every day isn't worse than the last. Finally, as I hit 100 pounds and realize my kids are more used to seeing me cry than smile, I go in. I tell the doctor all about the physical and emotional junk. She does blood tests and finds nothing. Her take - because I'm so mentally and emotionally overwrought my body is going crazy and falling apart. Diagnosis - bipolar. (That post here.)

So I go on meds and she tells me that once my body has regulated itself the physical stuff should lessen. Three months later - I seem to be more stable emotionally, the pain has gotten a little worse. I go back in and she runs more blood tests. Nothing. She says the meds haven't had enough time to do their job and I need to be patient. Three months after that the pain has started worsening. I go back in and this time, she sends me to a rheumatologist. That doctor determines I'm expremely hypermobile, but nothing else is physically wrong with me. Her last words as I walk out are, "That's something that's just going to get worse and there's really nothing we can do except maybe manage the pain". Those words were like a deathblow.

Fast forward again to a month ago. After a few more failures to find anything, I've stopped going to the doctors and looking for a new opinion. I'm tired of tests and no results. The meds that seemed so hopeful for making me "stable" now seem to have little effect, as the panic attacks and anger and sadness are creeping back in at more regular intervals. The pain in my hips and back has come to a place that keeps me awake at night and makes sitting to play on the floor with my kids impossible at times. I've lost hope completely, I've come to a place where I've decided I'll just have to live out my life like this.

And then a mere two weeks ago, as I sat with a group of knitting buds, a little bit of it came spilling out of me. My frustration, my anger, the pain - and they listened and then happened to mention that another knitting pal of ours had gone through some similar issues and had seen this naturopath in town who had been able to give her answers the doctors couldn't and clear the issues up. So I emailed her when I got home, without really giving it too much thought. The email I got in return was long, and the story it contained seemed similar to mine - pain, unending tests, no answers - except for the end, which ends in perfect health. She talked glowingly of this clinic and encouraged me to make an appointment, although she warned me it would be months before I could probably get in for a consult. With that in mind, that I still had months to ponder (and perhaps cancel?) this appointment and prepare myself, I called. Wouldn't you know it - they had two appointments, one for the testing, a second for the results, the very next week.

Slightly excited, mostly nervous, I made the appointments. Then I turned my head to the more practical aspect of this venture...the $$$. Most insurances don't cover any alternative medicines, so I'd be footing the $375 bill to go through with this. Two days later my friend Cindy, who also happens to be in the bible study group I lead as our "mentor mom", stopped by with a check from the church for $200 to "help out" with some expenses. My mood was lifted slightly by this and I figured it was a sign I was supposed to go. However, a day before, as I sat figuring bills and realizing that this was still going to stretch us a bit more than I wanted, I started to get nervous again. An hour later as I was still pondering this, my phone rang and the secretary at the church told me there was a check there for $100 for me donated anonymously from someone. My jaw dropped and I started bawling. Talk about someone trying to tell me something.

And so, last Tuesday morning, I went in to the small clinic. The doctor herself comes out to get you, no nurses, no waiting in a room endlessly. She led me back into a small room and sat down with me. Used to doctors who want to be in and out of your room in 10 minutes I proceeded to give her the cliff notes of the past two years. She asked questions, filled over two pages with notes, and was interested in every little detail, not only of how I felt, but how it affected every aspect of my life, what had been done before, the tests they'd run, the meds, their reasoning, my thoughts on my treatment so far...it just went on and on. I realized I'd been there for 45 minutes just talking to her. She allowed me to interuppt and ask questions, she explained everything to me. Then she did a series of tests that frankly I was slightly dubious about - if the doctors, with their high tech machines and in depth lab tests couldn't find anything, what in the world was she going to find with just her hands and a few simple machines? She looked into my eyes and using a method called iridology made a list of the parts of my body under stress. She hooked me up to a tiny machine that measured my heart tones. She tested reflexes and pushed pressure points. Last, she poked my ear and took a tiny blood sample that she said would be dried and examined.

After all this she asked me to book an appointment with a chiropracter she worked closely with because she wanted me to have x-rays on my lower back and hips, as she believed there was some skeletal issues there contributing to the pain. She said she was frankly surprised and disgusted that I went in complaing of pain there and no x-ray had been taken before. She sent me off saying she would see me Thursday and would have a full report for me. I went home and called the chiropracter's office and they said I could come in the next day.

So the next day found me sitting in a cheery waiting room where the staff seemed to do nothing but smile and laugh. They grabbed me coffee, chatted while I waited - it was a waiting room as I'd never seen a waiting room before. And then the woman who took me back sat with me asking a slew of questions about my pain, my health in general, how it made me feel. It was like talking with a friend, totally relaxed. Then she did several tests with me and the doctor came in. He also sat and talked to me, then did even more tests, and then sent me off for x-rays. When I was done he came back in and discussed his preliminary findings with me, although he said he wanted to wait until he had seen the x-rays to offer his official diagnosis. So his unofficial diagnosis: My right hip is sublaxted, meaning a slight dislocation, and has been for quite some time, probably since my daughter was born and I first started having hip pain. I didn't notice because of the extent of my hypermobility, which causes my joints to pop and move more than most people's anyway. Over the last two years, my body has compensated for this by shifting an extra 20 pounds of my bodyweight over to my left side, throwing my spine out of alignment as well. And finally, because the muscles on my left side were working overtime supporting that extra weight, they had become twisted up in a solid knot of tension that happens to lie, you guessed it, right where the back pain sits and where the spasms I have orinate from. I went from "there's nothing we can do and it will only get worse" to "here is the problem and I can help" in two minutes flat. I cried on the way home, a mix of relief, sadness over the lost time, and a new hope I hadn't driven there with.

Thursday found me back at the clinic in the small but interesting office of Dr. Potenza for the results. Nervous is an understatement. (What if they just said, "Wow, you're just messed up, good luck with that!) The answers were neatly typed up into a packet of information for me, which she spent the next hour elaborating and answering questions on. Her findings were a shock to me, and so utterly simple. Here they are in neat bullet list form for you:
  • I am intolerant to potato. Yes, potato. My body cannot digest it properly and so it's making my body try to work in ways it shouldn't have to.
  • I have a secondary intolerance to fruit and wheat. This means I can eat both of them, but not in combination or my body has difficulty digesting them. I ideally should eat them no fewer than 6 hours apart.
  • I have adrenal insufficiency. Your adrenal glands are "chiefly responsible for regulating the stress response through the synthesis of corticosteroids and catecholamines, including cortisol and adrenaline (epinephrine), respectively." (Wikipedia) Because of the physical and emotional stress at which my body has been operating at for the last two years my poor little adrenal glands are basically worn out, and so everything is just going wonky.
  • The best part - she doesn't believe I'm actually bipolar. The original doctor's claim - that because I was so stressed my body was physically in pain. Dr. Potenza's thoughts - if you're in pain all the time and feeling like there's no hope, your body's natural emotional response is going to be anger and/or sadness. So when the original doctor told me I was bipolar and that the meds would help, I did feel better for a time because I had some hope. But then as it just got worse physically the anger and depression came back, as a natural response and that's why the meds weren't really working, because there wasn't something there for them to treat.
So what does all this mean? First and foremost, on Thursday of this next week I go back in to the chiro, Dr. Mario, and he will give me an official diagnosis and begin treatment, which at this point is looking like the major adjustment of putting my hip back into place, followed by I'm sure several other adjustments to get everything else back where it belongs. I think some physical therapy for the muscles will be in there as well. I'm nervous about the initial popping the hip back into place part, but excited to not be in pain anymore.

It also means I can't eat potato ever again. Easy peasy, right? Not so much. See, potato is cheap, potato is useful...and it's in everything. No, really, I kid you not. Let me elaborate. I cannot have anything that has potato starch, potato flour or any other part of the potato. Most prepared foods contain potato starch or flour in some form. So packaged convenience foods are out. B vitamins are cultured on a potato base (niacin, thiamin and riboflavin), and happen to be used to enrich many foods, including most baking flours, pasta products, breakfast cereals and rice. Dextrose is a potato sugar derivitive, and is found in most canned foods, bacon, lunchmeat, ham and iodized salt. Iodized salt tastes bad, so they add dextrose to it to make it tasty again. Now the canned goods and bacon and lunchmeat, not such a big deal. Salt? Yes, it's in most everything pre-made. So anything with salt in the label...can't have. Even many uniodized salts have dextrose. The only salt I can have is something called Celtic Sea Salt. I'm not finished, the list is longer still....

Baking powder contains potato starch and it may not be listed on labels...so no eating pre-made baked goods. Tapioca has potato starch as well and is in a fair few items. Most yeast is grown on a culture made from potato. Other potato dirivatives that I have to look for are modified food starch, hydrolyzed vegetable protein, vegetable broth, MSG or "natural flavorings", and propylene glycol (in soda and ice creams). Penicillan type antibiotics are grown on potato cultures. Lastly, and this one is actually funny, I cannot use plaztic bags (like Ziploc) or plastic wrap, as they contain potato starch byproducts to make them biodegradable.

This means, in a nutshell, that I have to make pretty much everything I eat from scratch. Any baked goods, including making my own bread from a sourdough started or the one (1) type of yeast I can eat, have to be made by me. I can find certain types of pasta that won't have any of these things in them, but they're more expensive, so noodles will be more efficient handmade. Anything canned or pre-packaged is pretty much out thanks to the salt, so snack type foods and many convenient things I used for dinners, like canned tomatoes for spaghetti, are out unless I can them myself. My garden this year just became ten times more important to me. Basically, my entire diet will now revolve around vegetables and meats, supplemented by my homemade goods. If I go out to eat most of the menu will be off limits, so I'm looking to be a cheap date by eating mostly salads, and if we go to a friend's house for dinner I'll have to bring my own food. So don't be surprised when I show up for the summer BBQ armed with my own bread and appetizers. I'll be happy to eat those ribs though, pending that they haven't got a lick of salt or BBQ sauce on them.

The secondary intolerance means that I can't have grains or fruits within six hours of each other. Pretty straightforward in the main really, with grains being any type of grain under the sun and fruits being fruit in any form - raw, cooked, dried, juiced. Main thing here is that fruit is hidden in many things and means that the few foods left to me are limited further by the time constraints on them. Rather than take up an entire paragraph I'll revert to bullet list form again.
  • Anything with fruit or fruit extracts
  • Citric acid, which is added to quite a few foods including all canned tomato products
  • Nuts, as they are shelled using citric acid
  • Wine and vinegar, unless it's distilled, and therefore many condiments, as they contain apple cider vinegar
  • Oils, including my main cooking standby olive oil. The only neutral one is safflower oil
  • Additives like sorbitol and polysorbate - 80; found in chewing gum, toothpaste, cream cheeses, and salad dressings
  • Vanilla extract, depending on base
  • Commercial yogurt, due to the grape enzymes added
  • Vitamin A palmitate is fruit and is added to most milk and cereals
  • Fructose and date sugar
  • All colas and pops are fruit
  • Most juices
  • Annato coloring - in most butters
So any of that on the above mentioned list has fruit of some sort in it and has to be eaten at least 6 hours apart from a grain. I can buy milk and butter that don't have the fruit in it at health stores, and maple syrup so I can continue to enjoy some pancakes (as long as said pancakes don't have salt or baking powder in them). You can find yogurt without the grape enzymes there as well.

What this horribly long post that has taken me two hours to write boils down to is this: Aside from the physical issues that can be helped by the chiro, is it worth it? Am I willing to give up a huge portion of my diet and take on making almost everything from scratch? Will the lack of headaches, pain, digestive troubles, and anger and depression make up for the fact that I can never eat a french fry or slather strawberry jelly on a piece of bread I pull from a convenient bag again? I don't know. But I'm willing to try.

So in closing, I'd like to take this opportunity to bid farewell to the things I will miss most that I'm trading in (I refuse to think of it as giving up) for this new adventure (yes, I am trying to look at it as such). The last bullet list of this post, I promise.
  • A Starbuck's white mocha with a little bit of vanilla bean powder on the top
  • A whole wheat bagel smothered in cream cheese and strawberry jam
  • M&Ms and her relatives Milky Way and 3 Musketeers
  • Spaghetti sauce on whole wheat noodles
  • Those oatmeal cookies from the hospital cafeteria
  • A crispy chicken sandwhich from Burger King with fries and a soda
I've decided that was the most horrible idea I've ever had. I'm now thinking that perhaps I should finish off everything on that list. Instead, I'm going to walk away and put my own no yeast, no baking powder, potato free flour bread into rise and trust that in a few hours time when I pull a sweet smelling loaf of my own bread from the oven I'll realize that it beats greasy fries and over sweetened coffee anyday.


  1. Wow, sounds like you've been through a LOT to say the least, and glad you figured some things out.

  2. I've been meaning to buy myself a bread maker so if you give me your recipe and ingredient brand names, I can save you some time. You are a challenge Tawnymeister, but I will cook for you yet.

    I am sooo glad you had a good experience with these docs! Who knows if all the change is worth it? but at least you finally finally have an arsenal of info to base your decision on.

  3. oh my God. Those are some crazy restrictions. Good luck sweets. I know you can do this. If the doctors are right, it will all be worth it in the end.

  4. I'm glad you're getting some answers--and even more importantly, hope!

    Have you talked to our mutual friend J. about this? Her family has a lot of those secondary intolerance issues, so she's had a lot of experience figuring out Spokane sources and such.

  5. I am glad you are starting to get things sorted through. Buy a bread maker they are totally worth it!


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