Expanding Your Support System

I've been debating whether this is a subject worth discussing, as it's more personal than usual, and I'm still coming to terms with this difficult decision I had to make. Ultimately, I think it's important to put my fears and pride aside and open some new doors here. I hope that if you are really struggling with your illness and its effects on your pregnancy, you will consider reaching out for help. I am so happy that I did. So here we go...

Shrinks.

I've had a love/hate relationship with them over the past fourteen years. I haven't seen one in over six, and that is solely due to my frustration and anger over being passed off and labeled as a "crazy" when doctors couldn't find the cause of my illness. I'd see doctors. They would run tests that would undoubtedly be negative for all bad stuff. They would look at my charts and see that I'd been on antidepressants for depression (caused by feeling sick all the time). They'd send me back to my psychiatrist, stating that I was so ill in the head that it was affecting my physical health. Psychiatrists would insist I had a legitimate physical condition, but doped me up on mood stabilizers anyway. I'd see another doctor. Wash, rinse, repeat.

It got to the point where I hated (with every part of my being) the medical system, the physical doctors, the head doctors, and everything in between. (I mean, how do you begin spilling your guts to someone who has been the main source of your trust issues to begin with? And don't get me started on the idiot GPs I've encountered...)

And then my husband spoke out a few weeks ago. Never one to get bent out of shape about anything, he stated, "The quick decline in your overall mental health is terrifying to me. Your mood swings are so intense, you are down more than you are up, and you seem to have lost the drive to beat this."

I couldn't argue. I did, however, break down in tears, a common occurrence these days. But he's absolutely right. What's kept me going strong for so long is that, until the pregnancy, I've maintained a positive, proactive approach toward kicking Lyme Disease. I strongly believe that if we victimize ourselves, that stress and sadness will prevent us from completely healing. I'm also stubborn as hell by nature, and there's no way I'll let microscopic organisms ruin my life.

So why is this darkness creeping up around me? Hormones? Sure. Added pressure of protecting a fetus? Definitely. Feeling robbed of the "typical" motherhood experience? You'd better believe it! My list goes on, but that's not what's important. I'm sure you have a similar mental catalog of all things unfair, uncomfortable, and unfamiliar.

And let's face it: this is all really hard! Even if you're the most positive person in the galaxy, there will be times when you have those "woe is me" moments. That's probably healthy sometimes. We need to address our sadness, and I truly believe we need some time to mourn the loss of our old selves and learn how to get along in our "revised" bodies, which will eventually help us transition into a healthier future.

I know we are all in different stages of our recovery, and we have experienced this disease to varying degrees, but one thing we have in common is that we know how it feels to be in constant pain. We know how it feels to be isolated and misunderstood at times. Some of us have supportive families and friends, while others have suffered some serious neglect. What it comes down to is that all this sure as hell takes its toll.

To be honest, I probably wouldn't have stepped foot in a therapist's office today if my husband hadn't recognized I that need help. (I guess I wasn't s stoic as I thought I was--or I'm seriously driving him nuts!)

Sometimes, even though we know we are in trouble, it takes someone else to say, "Hey, you're going through a lot here, and as much as I am here to help you get through it, it might be beneficial to bounce ideas off of someone who isn't so emotionally invested."

So, yes, I had my first session only because I love my husband. That's not true. I also went because I love my child, and I want him to be born and placed in the arms of a mother who has done everything she can to ensure a healthy, well adjusted, loving bond.

The funny thing is, my experience today was amazing, and from now on I am going for me! It's liberating to sit there and guiltlessly dump your cares on an unbiased party. Once you're not floundering and pulling ideas out of a hat as to why you're sick and a little screwy in the head, therapy is no longer a terrifying experience.

I'm lucky to say that my therapist understands the mental issues associated with Lyme. She also understands my anger toward doctors just like her--those jerks who let me slip through the cracks of the medical system for so long. And she doesn't blame me. (Where were you a decade ago, lady?!)

Again, it was a much different experience now that I have a diagnosis and was able to say, "Here's where my recent problems come from; Will you please help give me the tools I need to cope with them effectively so I can stop being such a mean, weepy bitch?" Okay, so I didn't add that last part...

We started right away, and though it was uncomfortable digging up some ugly old feelings, it's already helped me gain some perspective.

Regardless of how much of a role your pregnancy hormones are playing, if you're suffering, I urge you to reach out and talk to someone. This goes to anyone with a chronic condition--not just pregnant women. We're not superheroes. We can't carry all this weight all of the time. Lightening the load even a little makes a significant difference.

Mystery Pains--What's to Blame?

Well, I had a feeling my surge of energy would be short lived. Still, I am grateful for those few days of wonderful freedom.

Tomorrow I officially begin my third trimester. My belly is growing bigger by the day (see above)! Dear, sweet Lyme and Co. has rewarded me with extra fatigue, bone and nerve pain, blurry vision, lots of twitches, and a dead right leg that seems to work and not work again depending on, well, nothing really. There's no rhyme or reason to any of this. I've also been repaid a visit from my old friend morning sickness.

Here's where it gets tricky (and here's where vague answers from doctors come into play).

Is it really morning sickness, or is the nausea and vomiting from the Lyme vertigo that's started back up again over the last few days?

Pregnancy vs. Lyme symptoms. Sometimes they feel like one in the same, so get ready to play the nine-month-long guessing game that leads to only one answer: Who knows?

My take is that symptoms are symptoms. Pain is undesirable no matter the root cause. Methods of treating these symptoms are somewhat limited during pregnancy, so as long as you stay on top of getting the issues checked out (i.e. make sure that baby is healthy and is not coming out before he or she is supposed to), life will improve in time. That's what I keep telling myself, anyway. We're strong women. We were built for this stuff, right?

I'm having the mysterious cramps again. Far different from the "normal stretching" that takes place as the uterus expands (a weird feeling but nothing to write home about). It's a very strong, pulsing, menstrual-like pain that radiates to my lower back and legs and concerns my OBGYN, though we can't find a reason for it. It puts me out of commission for days at a time, but mostly, it's just scary.

At the risk of sharing TMI, I am constantly my checking toilet paper for signs of blood, because it feels like it should be there. Paranoia? Perhaps. But it's a bothersome albeit temporary habit/fear, and I still have the yips over previous pregnancies-gone-wrong.

Sometimes I wonder if I'd be so paranoid about every little symptom if I didn't have Lyme, or if I'm just so in tune with my body after years of hyper-vigilance that I'm blowing things out of proportion. Is my mom intuition meter skewed already due to the fact that I'm deathly afraid of hurting my baby with this Lyme crap?

This is my first pregnancy, so I have no idea if those pulsing pains (called the womp womps, because if this particular pulsing pain had a sound, that's what it would be) are anything to be worried about.

My mantra this pregnancy: better safe than sorry.

I read all of the forum discussions. I know of the Lyme pregnancy horror stories lurking out there, and I don't want that to be me (or Wyatt).

I do know that both my Lyme and regular doctors agree: I have so much nerve stuff happening in my body (most of my Lyme woes are neurological with some extra love from Bartonella), it could very well be Lyme related.

All I can say is that if it's a pain that makes you nervous, there's nothing more reassuring than a quick cervix check and a heartbeat scan at the doctor's. It's worth the piece of mind, and a healthy mind is a healthy mommy and baby. (Words of wisdom from the giant ball of neurosis!)

Good Times for A Change

I swear, it's not my intention to only post about Lyme issues during pregnancy as they pop up (but boy, do they pop up).

Checking in to report that I've had five solid days of feeling physically able, and I am so thankful for this new, unexplained increase in energy. (Woohoo!)

Here's where a magic answer would save a lot of people some time and trouble, but of course, I can't tell you what I'm doing differently, because there isn't anything. I'm not even sure it has anything to do with my actions at all. This disease is weird to say the least, and I could feel like I got hit by a truck at any moment.

That said, I will continue to think positively. My circulation has improved, the numbness and tingling are minimal, and the twitches only happen once or twice at night.
I'm sleeping well, my joints aren't killing me, and the room isn't spinning. I even woke up this morning and did laundry, took out the garbage, did some dishes, and let the dog out to pee. (Don't worry, I know to stop well before I reach my limit.)

My husband took me out yesterday to get a new pair of running shoes. So what if the thought alone of running right now makes me want to curl up in the fetal position? It's inspiration to keep up this good momentum, and I plan on walking for little bits at a time to build up some muscle and get the endorphins going. I figured shoes were a healthier reward than chocolate or an ice cream cone (though far less tasty). If I get wiped out, I get wiped out. Exercise will be waiting for me when I can handle it.

So, if you only get one thing from this post, please know that Lyme pregnancy doesn't have to mean nine solid months of agony (It might be eight and a half months of it, but let's celebrate any good day we can get!) Five good days and I am recharged.

This moment of peace has allowed me to put things in perspective. I keep telling myself, "Okay, a couple more months! That's nothing!" And in the grand scheme of things it isn't anything. Before I know it, this little life will need to be cared for on the outside, and I maintain that if my attitude is positive, no amount of Lyme pain will stop me from being a good, happy, loving mom.

I've said it a million times, Lyme pregnancy is hard, it's scary, and it can make healing seem like an unattainable goal at times, but THIS IS SO WORTH IT! And think of how much sweeter motherhood will be knowing we had to fight so hard for it.

Good luck on this journey, ladies, and enjoy those good days, even if they are few and far between! You can do it!

*Note: A good day allowed me to go outside and take some pictures of the spring blooms (see above). Fresh air is so good for the soul.

Hi, Metabolism, Remember Me?

Nothing overly helpful to report today, though I do feel like I should share this morning's experience because it's a very real, discouraging part of pregnancy for some women.

Who am I kidding? Sometimes I just need to vent.

I had a routine monthly check-up with my OBGYN, and I made the mistake of looking at the scale. When I blurted out "Holy sh**! That can't be right!" the nurse laughed hard and ever-so-kindly reminded me that I still have a long way to go.

Some women are bothered by big scale numbers, and some aren't. All power to you if you're embracing those beautiful pregnancy "curves" people rave about, and if that's the case, no need to read any further today.

This is for the ladies who are concerned with what happens when you're Lyme pregnant, metabolically challenged, craving 10 tons of ice cream, and not able to exercise. (If you had a baby and stayed in shape, which I'm sure happens, you make me ill with envy and I am tempted to sit on you.)

I gained a whopping 33 pounds at only 26 weeks, which resulted in a crying spell in the parking lot after my appointment. I also told my loving (and forgiving) 150 lb, 6'4" husband that he's a lame*, insensitive jerk* for being so thin, and that I can't stand looking at his skinny butt*. (*=censored.)

Though it infuriated me at the time, I'm glad he laughed as my hormones took over. I swear, I used to be a very rational, well balanced person...

As I mentioned a while back, I am one of those people who takes great pride in being fit. I've worked very hard over the years to maintain a toned, "healthy" body. Before Lyme wiped me out completely, I was a long distance runner, and partly due to a billion forms of food intolerance, I was neurotic about only eating the healthiest, organic foods. I strongly believe my commitment to a healthy lifestyle is what prevented my major Lyme "crash" for so long.

I have been 100% inactive since August of 2008, and I now consider a brief walk around the store to be hardcore vigorous exercise. By some miracle, I only gained 10-12 pounds after I stopped moving around. I miss my metabolism greatly, but hey, what can you do? Sadly, any form of exercise leaves me bedridden for days.

Pregnancy weight is there for a purpose, and the little one is obviously first priority. I completely get that and believe in it! My tears come from issues that will arise further down the road, as once I pop this baby out, there's no way I'm going to be able to just go out like a healthy person and "exercise the baby weight off." I'm carrying about 50 extra pounds, and that's a lot to shed (not to mention a literal pain to lug around). Without the hope of being active again soon, I feel like I'm destined to be a slug forever.

I know some people might think this is petty, but honestly, I'm human, and every once in a while I let the fact that my body has failed get the best of me. Do I like being completely sedentary? Heck no! Who wants to lie around and eat all day?! (Wait, don't answer that...)

Typical Lyme symptoms set aside, this has been, by far, the toughest part of pregnancy. It's more than just putting on extra pounds; it's an issue about control over my own body-- I can decide what foods I put into it, but as far as activity goes, Lyme is an evil dictator. I have no control.

It's strange trying to balance the new instinctual need to be a strong, capable mother and going day to day saying, "Man, I just can't swing it today...maybe tomorrow I'll be steady enough to get off the couch."

And this isn't about squeezing into a size four (I swear, I'm not that vain); It's more of a constant reminder of my limitations. Learning to say goodbye to the old Sara and accepting the new, chubbier, slow-moving one is an ongoing and difficult process.

I know I will reach the acceptance stage eventually. Often times, I actually get there. It's just that some days I backslide and want to fight and kick and curse Lyme to hell.

Ultimately, when I'm better, I'm putting my awesome baby in one of those ridiculous jogger strollers I covet, and I'm going to run like my life depends on it!

C-Section or Natural Birth?

If you're like me, you're at least somewhat nervous about how your body is going to handle "the big day." Labor. Yikes. Lyme labor--can my body even handle that? I have a hard enough time walking around a grocery store for twenty minutes--how the heck am I going to push out a baby without completely falling apart?

The biggest question for me was, what's "easier" on the body, a natural birth or a c-section?

For non-Lymies, it's pretty straightforward. C-sections, though completely normal and acceptable, lead to a longer, harder recovery. My initial thought was, jeez--I've been laid up in bed for a lot longer than 5 days at a time--but what about all the pushing? The contractions? The emotional stress of natural labor?

Both physical and mental stress can take a huge toll on the body. Until I talked to my doctor, I was all about having a c-section. Quick, painless (during the procedure at least--not so painless afterward), and predictable.

I changed my mind, however, when I spoke with my LLMD about the pros and cons to both. It really comes down to what you prefer and what your OBGYN recommends based on your health history (Lyme and non-Lyme). Here are the highlights of our conversation (I'm paraphrasing here):

Me: What's better for Lyme patients, a c-section or a natural birth?

Dr.: That's such a personal decision, I can't tell you to go one way or the other. I will say that our previous patients were divided 50/50. Half had natural births, half had c-sections. There was no difference in relapse rate; all of the moms and babies did just fine. So again, it's a personal choice.

Me: That's good, but a little vague. How about this... pretend you're pregnant and about to have your baby. Which would YOU choose?

Dr: Nice try. I'm not going to answer that. Just keep in mind that regardless of whether you have Lyme, the body will heal much faster with a natural birth. Natural is stressful on the body during delivery. A c-section means a longer, more stressful recovery.

Me: I really want to have a natural birth, but I'm afraid I won't be strong enough! I have a hard time going about small day to day stuff--what if I don't have the strength to push this massive baby out?

Dr.: You're not considering the forces of nature. Trust me, your body is going to do what it's meant to do. You will be so focused on contractions and the labor process, you won't have time to think about strength or whether you're well enough to do it. That baby is going to come out regardless of how strong you are. You're just there to help it along and tolerate the motions. Nature really does take over.

Me: So you recommend a natural birth then?
Dr: I'm saying you can do it just fine.

Me: Did your other pregnant patients carry to term?

Dr: Yes, all of them did just fine. As long as you are taking good care of yourself and you are taking your antibiotics, you can treat this as a normal pregnancy. The problems you read about occur mostly in women who were undiagnosed prior to conception and during pregnancy. Plus, you're closely monitored, so your OBGYN will be able to tell early on if there are problems.

Me: What are my chances of a huge relapse after childbirth?

Dr: Well, it could happen. A lot of women are fine throughout pregnancy and don't even have Lyme symptoms at all, and then they crash after the baby is born. This is due to physical and mental stress, as well as the sudden drop/shift in hormones. It usually doesn't last more than a few months, and you certainly won't go back to the bad state you were in when you first started treatment. Consider it a flare-up. We're going to keep you on antibiotics for a while (and maybe adjust the dosage)after the baby is born to try and keep you from crashing. At the same time, you might not be affected at all. It's impossible to tell right now. Just be prepared for it, and make sure you'll have help around the house.

Me: And if I go with the c-section?

Dr: I would tell you the same thing. You might have a flare-up, you might get along just fine after the initial surgery recovery. I'd treat you with antibiotics just the same as if you have a natural birth. Both delivery methods lead to successful births.

So there you have it. Another choice to make based on intuition and personal beliefs (though I have a feeling most OBGYNs will have an opinion on the matter, but at least we know what one LLMD thinks). The good news is, either choice has proven to yield successful deliveries. If you've had an experience with either, please feel free to share!

Thyroid: Get It Checked, Ladies!

It occurred to me that my main focus has been on Lyme Disease as a whole (including all of those lovely co-infections). I've tried to keep posts non-specific, as not to exclude anyone. Plus, I'm only super familiar with the co-infections I have, and I try to only report on areas in which I am confident.

That said, there are a whole lot of other specific things that can go awry when you have Lyme. Today, I'm most interested in the thyroid.

As you probably know, many patients end up with hypothyroidism as a result of years of undiagnosed Lyme. I found out the hard way that pregnancy can affect the thyroid even more, regardless of whether you're on medication.

When I visited a high risk OBGYN a couple of months ago, he asked me what my new thyroid tests showed. I just shrugged and said, "What new tests?"

I've been on the same dose of thyroid medication for two years, and it hasn't failed me yet. In fact, I'm surprised at the difference it has made in my overall level of function. I'm not going to lie--I've only been tested once since then, and it was over a year ago.

He told me that he's seen startling changes in pregnant patients with thyroid issues. Some had levels that dropped to well below normal; others increased naturally from the pregnancy, and the added medication actually made their levels way too high. Another one of the crazy hormonal joys we experience.

Levels have to be checked at least a couple of times during the pregnancy, because they fluctuate so easily, and too much or too little medication can harm you and have negative effects on your baby. It's a simple blood test that can be done at the same time as when you have your routine bloodwork done at your OBGYN.

I made the mistake of shrugging the high risk doctor off, because frankly, I didn't like him due to his Lyme ignorance. Then the doctors I respect recently told me the same thing, so I got tested immediately. (Ooops.) In retrospect, I should have had my thyroid checked during the first and third trimesters, just to be safe.

According to the various thyroid sites I Googled, normal levels should fall between .3 and 3.3. A few other sites say it's .5 to 5.5. My doctor goes by the .3 scale. (Don't be afraid to ask for your specific numbers or have doctors explain your results. It's their job.)

I got my test results back yesterday, and I've gone from mid-range on the scale (with medication) to a .3, which is the lowest mark considered "normal."

That said, it really does help to get tested, ladies. You don't want to mess around with thyroid issues, and the medications are safe (and very much needed) during pregnancy.

Just don't forget to get re-tested again after the baby is born, as your levels might change again.

Here are some signs that your thyroid might be a little sluggish:

* Fatigue
* Weakness
* Weight gain
* Coarse, dry hair
* Dry, rough pale skin
* Hair loss
* Cold intolerance
* Muscle cramps and frequent muscle aches
* Constipation
* Depression
* Irritability
* Memory loss
* Decreased libido

(Yeah, I know, all of these are the same as Lyme...)


Here are some signs that your thyroid is a little too busy (or your dose is too high):

* Palpitations
* Heat intolerance
* Nervousness
* Insomnia
* Breathlessness
* Increased bowel movements
* Fatigue
* Fast heart rate
* Trembling hands
* Weight loss
* Muscle weakness
* Warm moist skin
* Hair loss
* Staring gaze

Again, all can be attributed to Lyme as well, but talk to your doctor anyway if you experience any of these symptoms.

Double the Aches and Pains

When I found out I was pregnant, I spent a lot of time wondering about how my body would hold up when it came time to deliver, but also what would happen when it came time to be a mom and actively participate in my child's life.

It seems obvious now, but I didn't think much about how my body would hold up during the pregnancy, AKA, how an already weakened body would magnify my symptoms as they popped up throughout the journey.

Be prepared, ladies-- backaches can put you out of commission if you're not taking good care of yourself and resting often.

I'm not talking about annoying aches that disappear with Tylenol. I've got some aches right now that make me want to kick, scream, and pull my hair out, and according to my doctor, these probably aren't going to go away soon. Here's the reasoning:

Like many Lymies, I've spent the majority of the last two years in bed or on a couch. Though I once had great posture, a strong set of muscles, and most importantly, a conditioned core, all of that went down the drain as I became unable to exercise. Muscles atrophy, stamina wanes to non-existent, and sadly, those stomach and back muscles you never knew you had under there weaken and basically leave your body like a limp piece of spaghetti.

Now, all of a sudden, your uterus is expanding to the size of Texas, and your center of gravity shifts. And all power to you if you've been able to maintain that recommended maximum twenty-five pound weight gain (especially when your Lyme takes a lot out of you and you get winded while walking, let alone burning calories by exercising.)
For the record, I'm at 25 pounds already, and I'm only six months pregnant. I'm also pretty strict with my healthy diet, so it's not like cheeseburgers and candy are doing this to me.

Take that extra weight and the uneven distribution of your girl parts, put it on top of a limp spaghetti frame, and you have one hell of a back problem. After consulting with my doctor and trying everything I can think of, here's what has kept me sane this past week:

1.) Wear running shoes or supportive sneakers. No flip flops, no heels, and no bare feet, even around the house

2.) Lie flat on the floor with your legs up all the way against the wall (your body is at almost a 90 degree angle). This takes the pressure off of your back for a little while. You can also lie on the couch or bed with pillows under your legs in the thought of being on the floor creeps you out

3.) The heating pad has been my number one relief so far. Some people say avoid heat during pregnancy, but it doesn't make me at all nervous if I keep the heat on my back and don't let my body temp raise too much. (Usually 15-20 minutes of heat does the trick)

4.) Regular recommended pregnancy stretches throughout the day

5.) Body pillows have not worked for me, but I hear they work wonders for some. If you sleep with a pillow in between your legs, it's supposed to help with aches and pains, as well as keep you aligned

6.) Most importantly, don't stand for long periods at a time. I'm lame and will admit that a long period of time for me is more than 5 minutes, but everyone has their own own limits, so just be aware of yours. I find it's better if I sit and rest for two minutes before I even start to get achy. Helps me go a lot longer, and I'm not whining by dinner time

Again, you have to go at your own pace, but this new pain has inspired me to do what I can to strengthen my muscles a bit, so I don't get my butt kicked when I'm in labor. It will also aide in a faster recovery later on.

Also, this something to keep in mind if you're not pregnant yet but are considering having a baby. Even if you can do 5 crunches a day, or just one modified "granny" push up, something is better than nothing, and you can work up to more in time. This goes without saying, but the stronger your body is, the fewer aches and pains you'll have along the way.

Of course, in the end, there's one thing that puts it all in perspective, and that's your amazing little baby. Being uncomfortable for a while is nothing in the grand scheme of things, and I'm not trying to make anyone nervous when I bring these issues up--I just promised to share the full experience of Lyme pregnancy here. You could light me on fire if it meant I'd have a beautiful baby boy. It's all worth it in the end.