Monday, September 28, 2009

Monkey Girl's Story...part 3

I was newly labeled...a Lyme Disease victim.

There is always a certain sense of relief that happens when your doctor finally gives you an answer.

Of course, I was still skeptical.
Only a few months before I'd been labeled with fibromyalgia and a few months before that labeled with autoimmune urticaria (hives).

My Guardian Angel (my father) must have been working hard that day.
My ND just happened to have gone to medical school with someone who was an up and coming LLMD and had been treating Lyme patients with her partner (an MD) for the last couple of years.

My ND made a personal call to her, and viola, I had an appointment with my LLMD in two weeks.

It really wasn't until I also tested positive for Bartonella and Babesia duncan i, that I finally let my diagnosis settle in my bones.

For those two weeks, I did nothing but research Lyme on the internet, sleep restlessly, and freak out about my new diagnosis. Even though I have a close friend who also suffers from Lyme Disease, and had seen her struggle with treatment for the last 5 years, it was still difficult to wrap my head around my looming future.

I knew enough about Lyme to know my treatment was going to be a long up-hill battle that could potentially go on indefinitely. I knew the future wasn't all lollipops and rainbows.

My first appointment with my LLMD proved to be exhausting and financially draining (haha). I got referrals to a pain specialist, an optometrist, and a psychiatrist.
My pain level was at a constant 6.5, my eyes were giving me so much trouble I had to close and rest them at least 15 minutes every hour or two, and my brain fog and memory troubles were effecting my ability to finish my classes and read more than a sentence or two at a time.

I already was in pure hell...or so I thought.

My LLMD first order of business was to put me on 3 months of Levaquin for the Bartonella. Yippee!

It's been 18 months since my diagnosis.
I've had severe highs and lows.
Good days and days I don't move from my bed.
Allergic reactions that have put me to the edge of my sanity.

...and still I am fighting.

And for all those other Lyme sufferers out there...

"But you look so good."

It's no wonder we suffer from Lyme rage.

peace and health,

Monkey Girl

Friday, September 25, 2009

Hush Little Lymie

Every night is the same. I go to bed with my husband around 10:30 PM. I have all the intention in the world of falling fast asleep and slumbering peacefully until morning. Oh, that would be a dream come true, literally.

Instead the experience goes more like this. I crawl into bed and try desperately to ignore how cold my hands and feet are. I flop around like a fish trying to find a comfortable position. All the thoughts from my day are replaying in my head and I’m making plans for tomorrow. I silently, out of jealousy, curse my husband who is sound asleep. Oh great, now I have to pee. Once I am back in bed the whole process starts all over again.

At this point I generally give up. Who am I kidding? I don’t even feel tired, in fact I am more awake now than I was all afternoon!

So much for that dream of pleasant slumber. I hit the internet. This is something my doctor has specifically told me not to do. "No computer at least a hour before bed." I lied to him and said I wasn’t doing it anymore. I can’t help myself, maybe I need a 12 step program. tonight however, he may forgive me. Tonight I found some answers to my problem. OK, problems.

#1 Liver toxicity.
“If you tend to awaken at 2:00 AM or not fall asleep until that time, this is a sign your insomnia is related to the liver”
That is me! 100%, I don’t get tired until 2:00 AM.

#2 Adrenal insufficiencies, I just got tested for this one, the test aren’t in yet.
“When the adrenal glands cannot synthesize the proper amount of hormones due to illness and stress, insomnia results.”

#3 Thyroid imbalance. I just started taking something for my thyroid imbalance.
Thank you Connie Strasheim and Planet Thrive!

#4 I really should have seen this one coming.
“Be sure that you don’t do any stimulating activity after taking the melatonin, because if you do something (e.g., read or watch TV), then it will backfire and it will keep you up for hours.”Ken Singleton
Whoops, computer got me again. Guess I need to listen and not lie to my doctor.

So what am I going to do to thwart my insomnia? Listen to my doctor, no more computer before bed. Try to stick to a set sleep/wake cycle and take a warm shower before bed so that I’m not so cold.

Other helpful advice from the Smart Doc and the internet included; coffee enemas, green clay, caster oil packs, epsom salt baths, and chlorella for the liver. A protein snack like yoghurt or warm milk a 1/2 hour before bed is supposed to help the adrenal issues. Oh, and did I mention no more computer before bed?

Monday, September 21, 2009

Monkey Girl's Story....part 2

Christmas of 2007/08 was horrible.

My Infectious Disease Specialist ceremoniously dumped me as her patient and my symptoms were coming to a head.

I was breaking out in hives almost every day.
And I was resigned to the fact that I may never know what was going on with my body. I figured either I had contracted some horrible illness and/or my body mistakenly thought it was under attack so it was attacking my body (autoimmune). Either way I was fucked.

I went to a HMO hospital in Seattle and saw their rheumatoid specialist for testing.

We tested for Lupus, MS, rheumatoid arthritis, and a couple of other autoimmune diseases.

And although my blood work showed super high inflammation rates, I tested negative for everything. At this point she diagnosed me with fibromyalgia and recommended I start taking an antidepressant.

I burst into tears at the doctors office. Another non-diagnosis. Another doctor telling me that an antidepressant was the 'cure-all' for my problems.

I left disgusted and vowed never to step foot in that particular hospital/clinic again.

By this time, I felt like the world's oldest guinea pig. I'd had two thyroid surgeries in 6 months, because my thyroid had stopped working and started growing nodules at a rapid rate. I had no energy. I was breaking out in painful hives at least 3 times a week. I was on heavy doses of antihistamines. My joints and muscles were in terrible pain. My bouts of insomnia were the worst they'd ever been, and if I wasn't depressed at the beginning of this ordeal...I certainly was headed in that direction.

No one was interested in finding out why I was so sick.

My only support was my dear dear husband.
Who held my head and hand while I was on the toilet. Wiped the sweat from my forehead. Let me sleep 18 out of 24 hours a day...when I needed it. And who had started cooking and cleaning because I couldn't even get out of bed.

Then one day in February 2008, my ND who monitors my thyroid levels suggested we test for Lyme Disease. I was skeptical, I had a friend in California w/Lyme and I just didn't think that was my problem. She convinced me we had nothing to lose...and with angels looking out for me, she just happened to know that we should do the blood work through a lab in California (Igenex).

Not giving it much thought, we went about our daily routine and struggles.

And 3 weeks later she called. She asked me to sit down, which is never a good sign, and told me I'd tested positive for Lyme Disease. CDC positive no less.

You could have knocked me over with a feather.... be continued

Friday, September 18, 2009

Monkey Girl's Story...part 1

I don't know exactly when or how I got Lyme Disease.

I certainly never remember getting the 'bulls-eye rash'.

But I do know I've been sick for over ten years. I mean really sick. And that until March of 2008, no doctor, no specialist, no ER, no hospital could tell me what was wrong.

"You're a mystery," the doctors would say.

I can't tell you how frustrating it was to hear those words.
But I heard them... over and over.

At first, it started with digestion problems.
I couldn't be far from a bathroom. Preferably my own.
Many many times, my husband would speed home, breaking every speed limit, just to get me to our bathroom.

After awhile I had to stop working.
I didn't know if and when I'd have what we called, 'an attack' where I'd spend hours in the bathroom. Afterward, I was so tired, I'd end up sleeping the rest of the day.

My doctor sent me for tests.
Sigmoidoscopy, colonoscopy, blood work, tissue biopsies, etc...

Nothing. After months of tests, the best they could come up with was...IBS.

That diagnosis was the first in a long list of what I refer to as 'non-diagnoses'.
Meaning...the doctors didn't know what was wrong...but they knew what it wasn't.

For a few years I struggled with these symptoms the best that I could.
On average, I went to the emergency room 2-3 times a year, usually for uncontrolled abdominal pain.
The ER doctors knew something was wrong. My blood work, by then, was screwy. My white blood cell count often showed a raging infection, but what kind they didn't know.

I had serious bouts of fatigue. All over body fatigue that could last for hours or days. Getting out of bed, showering and dressing would completely wipe me out.

I modified my life.
I stopped working completely.
I started acupuncture (which helped with my pain).
I got plenty of rest.
I started taking supplements & Chinese herbs from my acupuncturist and my chiropractor.

And slowly, I started to feel better.

What I didn't know was this was the first of a few 'mini-remissions' I would have after taking some antibiotics prescribed from my doctor (generally for an infection).

Every year I acquired new symptoms. I started becoming allergic to medications, skin cleansers, lotions, perfumes, and earrings (weird, right?). Really allergic. Anaphylactic reactions. I started carrying an EPI-pen 24 hours a day.

After a particularly scary ER trip (via ambulance) I was referred to an Infectious Disease Specialist. The doctor at the ER was worried (noticeably) and wanted us to immediately go in for testing. It was the first time (since I was 20) that a doctor used the "C" word (cancer).

Now we were scared.

Here I thought, we're seeing an Infectious Disease Specialist, right? Everything would be ok, and she'd find out what was going on. FINALLY.

Nope. Not even close.

For the second time in my life, my doctor was more interested in writing a paper about my 'weird' illness than actually healing me. I was going to 'put her on the map' as they say. So all in the 'effort' of finding my illness, she sent me for...

more blood/urine work
a bone marrow biopsy
a spinal tap
countless trials with new meds

Only to dump me as a patient when I didn't have the disease she wanted me too.

And then the shit hit the fan. be continued.

Thursday, September 17, 2009

The people who are there for you

This is written in honor of National Invisible Chronic Illness Awareness Week and has been cross-posted to gratitude365.

One of the more heartbreaking aspects of being sick is the change--or the loss of--relationships. I went through this the first time when I became a mom. My relationships with friends without kids changed. I didn’t have as much time to invest in them and they couldn’t always relate to my life. Getting together required advance notice, a negotiation with my husband, or hiring a sitter, so it just started happening less and less.

Then about a year and half ago, after my second son was born, all wheels fell off. I went on a roller coaster of infections, symptoms, and doctors and was finally diagnosed with Chronic Lyme Disease. I started to go through the friendship change again. Not only was I living with a chronic illness, but was also staying home caring for a baby and a preschooler. Getting together with friends was even more complicated. Not just because of logistics, but mostly because I was--and still am--sick and tired. And if I get a break, I want to crawl in bed, go get a massage, or swim a few laps.

So, I did not invest in some relationships like I would have liked over the past year. I’ve just been too overwhelmed with my own life. But frankly, I’m surprised and disappointed with people who I thought would “be there” but aren’t. They might have been at first, but I think over time, there’s an impression--or expectation, maybe--that I should be better by now. Or maybe it’s because I don’t look sick they don’t realize how sick I really am. Or maybe they’re buried in their own overwhelming life and I don’t know it because, like me, they’re pulling off a Ginger Rogers act.

But sometimes I find connection where I least expect it. For example, an old colleague on Facebook, whom I haven’t seen in 10 years, sent me a very kind note after reading about my struggle with Lyme. He shared that his wife has MS. He wrote, “Her symptoms are invisible to the rest of us who, at times, are somewhat insensitive to her private suffering.” I teared up when I read that. He is one of the few who get it.

Lyme has given me my new BFF, Alix. We were acquaintances and Facebook friends, when I posted something about looking for a far infrared sauna. She eerily commented, “Do we have the same thing?” Alix has since then become a huge blessing in my life. She’s the only person in the world I don’t have to explain anything to. We go to each other’s doctor visits and discuss medications, supplements, diet, and body functions ad nauseam. And in the midst of her own suffering, she finds a way to comfort and humor me in a way no one else can.

Of course there’s my four sisters and a couple girlfriends that I’ve known forever who even though they don’t live here, will say they wish they did so they could bring over a meal, take the boys, or go out for a much needed drink (even if it is only green tea). And those relationships haven’t changed, if anything, they grow stronger by the day.

As hard as this has been on my husband, and we’ve had some rough moments (to put it mildly), I’m constantly amazed by his loyalty and capacity to care for me. I’m reminded of our wedding vows: “Loving what I know of you and trusting what I don’t know, I choose to spend my life with you.” Who would have thought we’d be faced with “in sickness” only six years into our life-long commitment. But, as much as this sucks, without Lyme, I wouldn’t have realized how much that gamble has paid off. I can’t imagine facing the future with anyone else.

Sometimes I get really down about not being a very fun mom. I’m fatigued. I’m in constant pain. I’m irritable. I have panic attacks. I let the sitter take them to the park. I let Dad do the roughhousing. And the soccer, baseball, golf, hockey, croquet, or dirt digging in the front yard falls to the neighbor girl to manage (what a blessing she is). I’ve had many teary moments wishing I could go running and giggling with abandon after these active boys. But on the flip side of all this, I think--and hope--that perhaps I’m raising empathetic boys. I’ll never forget the first time Ry asked me, “You fragile, mommy?” And then just this week, while his dad was out of town on business, he says to me, “I’m going to take good care of you Mommy, but I can’t cook.”

And then there’s my own father. We’ve had our differences over the years. And there’s pain there. But my having Lyme disease for whatever reason, has made him come to terms with what he sees as his shortcomings as a father. He has apologized to me, which means more than I can ever write into words. I feel like he’s “seeing me” more than he ever has, and he, along with my mom, is becoming a reliable source of empathy.

My former colleague put it this way referring to his wife's MS: “This new, permanent member of our lives has taught us many things about living. I wish the positive lessons learned could have come through different means, but they have come and we are grateful.” And to that I say: ditto. And I can only add that may I never take these relationships for granted again. While I am not grateful for being chronically ill, I am grateful for the deepening of these bonds, the love I’ve experienced, and new eyes with which to see it all.

Friday, September 11, 2009

When to Hire a Mold Expert

The following is a guest post from Susanne of Adventures of a Soap Maker. Becuase if you're a Lymie like me, you likely have mold sensitivities. 

When should you hire a mold expert? Don't bother. Recently we hired a mold expert to do indoor air samples as we were concerned about a mold problem in our home. The tests came back and according to our "expert" we didn't have anything in our home that needed treatment. Yes the air samples had mold in them. But according to the experts the mold we had in our sample wasn't statistically significant enough to point to an indoor source. He believed that what was in the sample had been tracked in by people and dogs. My symptoms told me otherwise. The expert looked at me like I was crazy when I told him I was sure we had mold.

At a loss for what to do next and a word for the experts that we didn't have a treatable mold problem, we installed an infinity air purifier to our HVAC system. The air purifier kills mold, dander, bacteria,viruses etc. Within 5 days I was feeling much better and actually in certain parts of the house had no symptoms. However, certain rooms would flare up my symptoms. So we bought an $8.00 mold kit from Lowe's. Big surprise--the test was positive for mold! The picture above is our mold petri dish after 5 days.

So the hunt for a mold source was on. We removed carpet in our home office. We had already removed my son's carpet before the air samples were done, but when we went back in to remove the carpet in his closet we discovered mold underneath the carpet and up his wall and in his ceiling. So much for the expert advice! My recommedations for anyone out there with mold suspicions: "find it yourself!" In our case the expert did not lend a bit of help to the situation, in fact he temporarily through us off the trail of what we needed to find. I was getting sicker by the day. I am so thankful for my husband who hung in there with me on the hunt.

Moral of the story: be your own mold detective. If you find yourself facing a mold situation, check out the
American Environmental Health Foundation and do your own research.