Friday, December 31, 2010


I've been meaning to come in and talk about my lack of posts. Things got a little weird and hectic for awhile.
Back in September I developed this weird path of bumps on the back of one thigh. From there they spread... and kept spreading. Turns out they were not bumps but hives. They were everywhere after about two weeks. Two weeks, of crazy, big itchy, all over my body hives. I thought I was going to go crazy.
I didn't want to take anything because I was nursing. I was afraid of the antihistamine family because they can often cause a decrease in milk
supply they say. Also drowsiness and sedation in the baby. Plus, as we all know, I'm a little anti medication.
Two weeks and they aren't going away. I thought, "If they are hives, they'll go away eventually right?" I read online that you can be exposed to an allergen and sometimes it can take a while to get out of your system, so I kept waiting it out.
Every day.... Ugh.
I gave in finally. Went to a walk in clinic down the road and thought they could at least give me an idea on why they were not going away, rather it was normal for them to be there so long and what to do about them.
The walk in clinic was less than helpful. She told me that it really could be anything. She then proceed to 'lecture' me on eating healthy.
I said, with all due respect, I eat pretty healthy. She started listing no high fructose corn syrup, no artificial dyes, etc etc.
Again, I said, with all due respect, I don't even buy that stuff. I shop at the Farmer's Market, the local grocery, the natural food store, etc. ON a rare occasion I'll have a regular soda, or give in to a craving for a bag of Lays or something weird, but it's pretty rare.
So she said, well, then cut out dairy.
haha, I said, my little one here is breastfeeding still and she appears to have a cow's milk sensitivity so for the past 4-6 months, I've really not had any dairy.
We moved onto chemicals in the home next. Bleaches, soaps, shampoos, laundry detergent.
hmm.... once again, I use natural products I said. I use soap nuts and homemade detergent for my laundry. I use cleaners made with vinegar, tea tree oil and lemon juice. Nothing has changed anyway on that.

So she said, well, maybe it's not hives... She gets out a book. Says, okay, it is Pityrissis Rosea.
She says, "it will just run it's course over a few weeks to a few months, there's not much you can do until it does. Try oatmeal baths." And sent me on my way.


I go home and look into this new fun diagnosis only to find none of the symptoms seem to make sense.

I try to find a general doctor at this point as I do not have one. The soonest one can see me as a new patient is months from now. I go ahead and book the appointment thinking, "Well, the hives will be gone by then, but It would probably be good to have a regular doctor anyway."

In the mean time, I find a dermatologist to book an appointment with.

Go in, she looks at it. We discuss the in's and out's of what has been going on.

  • They just kind of popped up one evening
  • They got worse and worse
  • They are never completely gone
  • They do 'spread' or move. Sometimes they are concentrated on say my leg(s), other times my arm(s), back, hips, etc
  • Every morning they are very bad. But they seem to fade by evening.
  • Never had hives or any allergic reaction before (only to coconut, and no hives)
Here's what I've tried:

  • Changed sheets and washed completely
  • Stopped using Laundry detergent, soaps and everything for a few days.
  • Bought all new 100% cotton clothes and sheets and only wore those for a week. (I was the Scrubs Mama for a week! haha)
  • Slept in another room
  • Slept in another room for an entire week (living room floor) only using all new 100% (never been put in the bedroom) cotton sheets and I would pack them up in a big tupperware container in the morning so no 'cat hair' or allergens or anybody was touching them other than me
  • Went on a 'bland diet'. Started with completely no diary of any sort (or soy) no tomatoes, no sugars, no anything that is common allergens such as nuts or berries. Mainly chicken, rice, etc.
I'm sure there were more.
She seemed more fascinated than able to provide an answer for me.
The first visit she listed the 'diagnosis' as "Contact Dermatitis" gave me a prescription for something I can't even remember now (I looked it up and it was not compatible with breastfeeding) and a steroid cream I was to lather my entire body down with every day, twice a day.

I returned with no amount of relief the next week. We pretty much went through the same song and dance again. Her fascinated. Not able to provide answers. "Keep using the Cream", "Sometimes things can take a while to respond". In the timeI worked with her, she came up with everything from bed bugs, to flea bites, to an unknown newly developed allergy.

By the end of the 3rd visit, no answers, and only new questions, I gave up on her.

I contacted an allergist and set up an appointment there. I figured, okay, if this is an allergy, we need to figure out what it is and why and make this go away.

I've had hives every day, all over my body, for almost two months at this point.

The allergist listens to my tale. Laughs at the dermatologist for prescribing the cream. He says, "okay, here's the deal. You've had hives for about five weeks now. Once you get to six weeks, they are considered 'chronic'. You are not at the point yet, but you are close. Chronic hives are rarely ever associated with an allergen."

With this I was a little taken aback. Hives, not associated with an allergen? Well, what else could possibly cause hives? Never heard of such a thing.

He said that doing an allergy test would not give us an answer and would only succeed in giving him money, it was pointless. What we needed to do was order bloodwork.

Hmm, okay. Why?

Once you get to the point of having chronic hives you have about a 60% chance that they are an autoimmune response. Could be another autoimmune type disorder like Lupus for example, or it could be a disease all on it's own in which your body wakes up one morning and decides, 'oh hey, I don't like you skin cells anymore, I'm going to attack you!' This is called Chronic Urticaria.
Or you've got about a 35% chance it's not autoimmune, but we'll never figure out what it is and we just try to treat the symptoms.
Last, you have about a 5% chance that it could be an allergen.

Most uplifting news of the year.
It gets better.

Once you have chronic hives, you'll probably have them for the rest of your life. Even if we figure out what indeed they are, autoimmune themselves, conditions of another disease, whatever, there's not really a good chance they'll ever go away.

Apparently once your body switches that mechanism 'on' you can't really turn it back off. You can only treat the symptoms.

I worked with him on a few different medications. Turns out OTC Claritin actually works the best for me. Nothing gets rid of the hives completely, but the Claritin does make them barely noticeable 'spots and dots'. Like little mosquito bites.

My bloodwork came back that it was indeed autoimmune. My ANA test was defiantly indicative of some sort of autoimmune disorder. He also said my 'thyroid levels were wonky'

Meanwhile, it came time for that general doctor appointment I had set awhile back thinking that there was indeed no real reason to.... ha!
He looked at my labs from the Allergist and said we needed to do a little bit more, so more bloodwork.
He also said that he disagrees and thinks if we figure out what it causing the hives, we can make them go away.
I went to a Rheumatologist for more bloodwork. We wanted to rule out Rheumatoid Arthritis, Lupus, Lyme etc. I really liked him. He was a cool guy and we talked a lot about eating healthy. He is a frequenter of the Farmer's Market as well. We talked about panny pan squash, haha fun things like that.

Bloodwork came back negative on all panels. So no Lupus, or RA or anything which is great! I do, however, need to go back to keep a check on that ANA. Sometimes, he said, a disease can lie dormant and not really show any signs or symptoms. The ANA indicates something, so it is worth keeping an eye on just in case. Plus, once you develop one Auto immune disorder, often times, more than one pops up.

We also ran more tests on my thyroid and the general doctor said, this time, everything seemed fine, but lets do an ultrasound just in case.

Did the ultrasound and it came back with some abnormal findings. The tech said it was slightly enlarged, and overall just not healthy looking. She suspected Graves Disease or Thyroiditis.

So, off to an endocrinologist I go now.

Lets recap a bit:

I have now been given diagnosis' from:
  • pityriasis rosea
  • contact dermatitis
  • flea bites
  • bed bugs
  • milk allergy
  • soap rash
  • lupus
  • graves
  • thyroititis
  • who knows we'll never figure it out
  • dyes and food additives sensitivity
  • chronic autoimmune urticaria
I have been given steroid creams, a medication I couldn't take, one I couldn't afford (I didn't touch on that one. Clarinex was $120 for 30 pills AFTER my insurance. It stayed at the pharmacy), OTC Claritin, Allegra which did nothing, Zantac which did nothing...

I've been to see a walk in clinic doctor, a general practitioner, an allergist, a rheumatologist, and an endocrinologist. Oh, and of course the labs for the bloodwork, and the ultrasound tech too.

Whoo. Why have I been so busy and exhausted?! lol

So, anyway. The Endocinologist (another cool guy I liked, very pro breastfeeding, pro healthy eating etc) looks at all my labs and says, "okay here's the deal. You don't have Graves."

This was such a relief in it's self because being hyper thryroid, is pretty much a deal breaker in a lot of ways when it comes to nursing. Plus, it's a pain. Just in general.

'But you do have an auto immune thyroid disorder called Hashimoto's Disease."

This is kind of good news. In the scheme of what disease to have at least... It's easily treated (not cured of course) with a hormone replacement pill taken daily.
Basically, my body decided it didn't like my thyroid anymore, decided it had to go, and it will slowly attack and kill it until it just ceases to exist. Meanwhile all those extra crazy, attack cells were swirling around and decided, 'Hey! let's attack these mast cells and kill off this skin too!" Which causes the hives.

Hashimoto's in often associated with hives.

There's still some debate on rather the hives will go away. They may once my thyroid is under control. They may just lessen. Or they may just be there.

I have to say though, a few months in, you get kind of used to it. As odd as that is to say. I guess you just learn to deal with it like you would diabetes, or high blood pressure or whatever else.

You do get really sick of the questions and advice though.
"Oh, did you try switching soaps?"
"Did you stop eating____?"
"Have you thought about sleeping in another room?"
"Maybe it's because _____"

People don't understand chronic hives. They do not know it is a disease all on it's own. Like when I first got them, I thought there was a reason, an answer. People do not know and can not accept there is no REASON.

Hashimoto's is not fun either, granted. It's got it's own list of symptoms that are not ideal, especially for someone who's trying to tend to two kids and a house hold!

The questions about possible symptoms were hilarious to someone who just had a baby not long ago:
  • Have you gained or lost a lot of wright recently? Um, yes, I just had a baby. Both.
  • Are you often tired or run down feeling? Um, yes, I just had a baby.
  • Have you experienced hair loss? Um, yes, I just had a baby.
Some of the symptoms associated with Hashimoto's have caused me to feel like I need to just pass out in the middle of the living room floor in the middle of the day. Tiredness at night but sometimes unable to fall asleep. (That one really sucks) Anxiety like woah. I am so thankful though for this one to an extent. Anxiety and depression are very much associated with thyroid disorders and I am very much hoping that maybe my anxiety problems might go away. Wouldn't that be amazing!

Anyway, I've not only felt so tired and so unmotivated that I just haven't been around, but I can't even count the amount of doctors appointments I've had.
It really throws off your schedule to have to balance that many doctors appointments that I have to rearrange things around.

Add in the baby who of course takes up lots of time, the older homeschooled one who has activities and things, the husband, the household, dinners, the Holistic Mom group, the Homeschool Co Op, etc etc and I just haven't had time to update!

(Oh and making all those Christmas presents!) Hope all is well with everyone else.

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