Thursday, June 9, 2011

The Financial Burden of Lyme Pregnancy

I've gone back and forth over whether this topic is worthy of discussing, mostly because the information I share has always been kind of personal and there has to be a line drawn somewhere--but I feel like since I've been pretty candid from day one, it's only right that I share everything I've learned about the effects of a Lyme pregnancy and beyond (the more prepared we are the better, right?), and that includes sometimes having to make sacrifices that we hadn't expected. More specifically, financial sacrifices.

I've yet to meet a person who hasn't believed that the financial strain caused by Lyme Disease is nearly as bad as the disease itself. Maybe it's just me, but I don't hear anyone saying,"Insurance denied me again? No worries--I'm rolling in extra cash and my credit is stellar, so these big out-of-pocket bills mean nothing to me."

I'm not unlike many people dealing with this disease--if you add up twelve years worth of medical expenses (the majority of which were accrued while trying to find out what the hell was wrong with me), the cost easily exceeds 100k.

I haven't had the heart or stomach to add up the cost since my diagnosis, but I know that currently it's $450 each time I see my LLMD, double that if I'm seeing two doctors. Insurance is another $400 a month and doesn't cover my Lyme visits. Add in monthly meds, tests, supplements, $275 a week for childcare on days I'm stuck in bed, high emergency room co-pays (luckily there haven't been many), the cost of extra ultrasounds to monitor the baby (the last high risk doctor bill came to $675 for an ultrasound), the list goes on. I will admit, I have the world's worst insurance company and will drop them and find a new one as soon as this baby is delivered, but still, Lyme life ain't cheap.

Here's where factoring in finances causes mixed emotions: To me, there are two kinds of people--the kind that feel like they need to own a home, be settled, and be very financially secure before having any kids. They are the ducks in a row kind of people. Then there are the people who feel like no matter what, they will find a way to make ends meet and provide for their children, and that waiting for home ownership or a debt-free existence doesn't make or break the decision to have a family.

My husband and I fall into the second category, so take this however you see fit.

Since becoming pregnant (and parents) we struggle even more financially. Never to a point where we feel like we can't take care of our kids, but we were taken off guard when it came to the sacrifices we would have to make in order to make sure our family was comfortable.

For example, here are some of the changes we've made to get through two Lyme pregnancies and parenthood:

-My husband has to work extra long hours (70+) a week to maintain a job that pays well enough to support us (he'd love to switch jobs, but the money is too good there, and we need the income since I can't work)

-Since I'm not well enough now to be by myself all day and night with a baby, we had to hire a nanny. We can only afford the nanny 3 days a week, as childcare is expensive

-Due to the extra bills of a pregnancy on top of Lyme, we had to choose whether it was beneficial to just scrape by without an extra dollar to our name each month, or give up some luxuries.
By luxuries, I mean our condo. When we found out we were expecting again, we moved into my parents' home to make sure we had enough money to stay afloat--we just didn't know what we were going to get hit with this time around. They work and live out of town during the week, which gives us most of our independence still, and they were gracious enough to let us use what would have been rent money for my medical and childcare expenses.

-On the weekends, my parents come to the house and help take care of the baby while I rest. When they show up with groceries, formula, or diapers, I am embarrassed, but I don't decline them because we need all the help we can get. In return, we do what we can to keep the house maintained and earn our keep there

-We've sold most of our household items and furniture on craigslist to eliminate the need for storage and help pay for the $7,000 hospital bill we're about to receive once the baby is born. When we are ready to move (which won't be for a good while), we will start from scratch, which is something we see as a big positive for us psychologically (who doesn't like a fresh start? Honestly, we feel like we need one after this Lyme ordeal.)

Just so you have a basic idea of how we're used to living, I can say that we've always been somewhere on the lower end of comfortable. My husband earns a good salary (though not 6 figures), one many would hope for, though we are not well off either, especially since I'm not working. We've been able to keep up with our payments, credit card bills, and a frighteningly large school loan that my husband will regret taking until his last living day. We have enough to eat, our kids have enough clothes and toys, and we've always found a way to make ends meet or purchase something if we needed to. Lyme pregnancy is the one thing that's recently made us say, "Maybe we should put some groceries back so we can get diapers AND formula this week."

I'll just add that we are minimalists by nature. We're actually not all that into gadgets, technology, "stuff," clothing, fancy cars, and for the love of god, we hate clutter and things we don't absolutely need (my husband is much better at determining what a real need is, but I try...hehehe). We prefer to rent, and if we could get by in the sticks here without a car, we would use public transportation for everything. That said, the scraping by thing isn't a big deal to us, because we don't feel like we're missing out on material things--mostly because we just don't care enough about them.

We do, however, get pissed that all of our cash is used up paying medical bills that should never have needed to happen in the first place. But that's the life of a Lymie, right? At the risk of sounding like a broken record, I hit the lottery when I met my husband. He is kind, patient, generous, and he would do anything in his power to support me and get me better. As much as I feel guilty about our financial struggles, he continues to do what it takes to get us through it all.

He agrees that we have no regrets starting a family before we were financially "secure." In fact, it's the opposite. It's been a financial struggle, but our lives are so much better as parents. Day to day living has never been more difficult, but in the end, we've never been happier--as crazy as that sounds, it's true.

Ultimately, I'd say that while a Lyme pregnancy is tough on the purse, it hasn't stopped us from, so far, raising our boy well in a home full of love and happiness. If you can prioritize and reconsider what you actually need in life (which Lyme has forced many of us to do already anyway) you'll probably find that starting a family is well worth the sacrifices made.

Just be prepared for some added expenses. I knew they would be there--I just didn't realize how much these little babies actually cost! They're lucky they're cute!


  1. I just wanted to thank you for keeping this blog. As a lymie with bartonella for 4 years (and right in the middle of a relapse) I love to know its possible to have children and look forward to it in the next few years. I really do look forward to your updates and consider it a blessing that I have found this blog.

  2. I always assumed, since you and your husband both seem to be well-educated and because I knew you paid for childcare sometimes, that you were doing better than the average Lymie, financially. Looks like I was wrong to assume! Now I feel guilty and embarrassed for always griping about our finances. Sigh.

    It's a blessing that your husband is able to bring in at least a decent income (though I realize 70 hrs/week is no picnic and can even negate the increased money, having him gone so much!). I am lucky that my husband also makes about "average," which for 2 people, is better than being dirt poor.

    But man, the doctors' rates stink! Ugh. I think I use not being financially ready for a baby as an excuse, when the real truth is that I'm not ready health-wise. I keep thinking that if I can at least get the money situation better, it will make up for my health sucking. Maybe it will, who knows. Both problem areas (money and health) scare the $#*@ out of me. I'm so sorry for anyone in this situation, and I'm sorry to hear that you guys are struggling.

    We have recently also been selling off things on Craigslist. I gotta admit, it feels good. I think Craigslist is basically the greatest thing ever...especially for us, living in/around a big city, because it's that much easier to find a buyer for your items, and also to find exactly what you are looking to buy (i.e., a specific couch, carseat for baby, washing machine, etc). I have already been scoping prices for baby items in my area, and it boggles my mind how much I can save. The added bonus is that all that stuff has already "off-gassed," which is great for my sensitivity to smells coming from new things.

    One last thing....and this will sound very silly. I have recently discovered how much I can save by using coupons. The show "Extreme Couponing" on TLC opened my eyes (though I am not stockpiling for the apocolypse like those people). I have learned to check a few local blogs that tell me what coupons to clip and use, from which newspaper inserts, and what stores to use them at, etc. You would be amazed, just seeing the diaper coupons (of course I don't clip those). It seems like this month I will end up saving 40% on my groceries, by using the coupons I've printed online (just going to manufacturer's websites), looking for deals in the store itself (I recently got 6 dinners' worth of ground sirloin for about $3), and using those "catalina" coupons that print at the register.

    I feel like this is one of the few things I can do while sitting at home on my butt. I look for coupons for things I know we need to buy. I can type "Classico coupon" into Google with the little brainpower I have, and click "Print." Then when I see it go on sale at the store, I use the coupons, and buy 2-3 what I'd buy if it was full price. So I hope this helps someone!!!!! Sorry to go on and on, I just am excited about my recent discoveries. It has breathed new life into our budget, and it's a silly way of taking stress of my shoulders.


  3. This is an example of the kinds of websites I am using. I have bookmarked a couple for my area. As you can see, it's easy to get a roll of paper towels for 19 cents! Or a bag of chips for $1!

    As you'll see here, some of the best deals to be had with coupons involve diapers:

  4. You are so ahead of most people on every level! And when life does afford you a few luxuries which will happen, you will appreciate them so much more. Blessings to you and your family!
    It IS crazy how much we all spend on recovering from tick borne illnesses. The average person's head would spin....

  5. Thank you all for the kind words! Much appreciated and good to know there are others out there in the same boat.

    Hoos-- I always wondered if the coupon thing was beneficial. Some people swear by it...then I saw that new show you were talking about and it freaked me out a little! (I am the anti-hoarder hehehehe). I figured there HAS to be a way to find a balance between coupon clipping obsession and smart spending.

    I have a hard time finding coupons that aren't, "$1.00 off when you buy two or three"...) To me it's not enough savings to keep the paper, and I never need three of anything. That said, I might have to change my way of thinking. I'm definitely going to check out the links you posted, because I feel like there's a lot of opportunity to save, I just don't get how to do it yet.

    Thanks for giving me a project while I spend these last 27 days of pregnancy in bed resting up for the insanity that is about to become my life. It's hard to "nest" in someone else's house, so I've been looking for simple things to do to make me feel productive that don't require a lot of energy. :)

  6. I was wondering if anyone on here has anxiety/panic issues as well as Lyme & co-infections?
    How did you deal with it during pregnancy? did you stay on meds? did you develop postpartum?
    Any advice anyone can give would be great!!! :)

  7. Sara,

    Just checking the inserts in the Sunday paper is a good place to start. Things like diapers and such go on sale a lot, so it is good to see if they are cheaper that week at the drugstore vs. the grocery store, etc, and you'll find that just by looking at the Walgreens insert, the grocery store's insert, etc. Then just clip whatever coupons are in the the coupon inserts (RedPlum and SmartSource) for the items that are already on sale.


    Many women take their SSRI (a type of depression/anxiety drug) during pregnancy. You would just need to check with the doctor prescribing it. My friend (non-Lymie) did this, because she didn't want to risk being so anxious during pregnancy. She breastfed and I'm not sure if she stayed on the meds during that or not. She did have postpartum depression, but she was able to get through it, with the help of meds too, but also just family support (having them there to help with the baby and show her how to do things and not to beat yourself up, etc).


  8. Hi Sara. This is yet another topic that we can relate. We had three people seeing a LLMD for three years!! I still don't know how we did it (we still have quite a lot of credit card debt though). It's so great you have family support. What a blessing! We got some limited financial support the first couple of years but we've pretty much been on our own. Three years ago we moved to live down the street from my sister and she watched my daughter a lot when she was a toddler and the paralysis was really bad for me. But still it has been a give and take situation because my sister doesn't have a good support system either and sometimes I would find myself really sick watching her kids too (from my position on the couch, of course)! It sounds like you are making some great financial decisions. My husband lived with his grandma for the first few years of his life and they are some of the best memories he has. The most financially liberating thing we did was purchase our rife machine. It was hard upfront to decide to pour a couple thousand into something, but we literally saved tens-of-thousands of dollars from the treatment it provided us. Of course it is no help to me now that I am pregnant. I am getting my prenatal meds from my primary care doc who is covered my my insurance but he is not and LLMD. He wouldn't cut the mustard if I needed any real treatment but I appreciate that we aren't going further into debt. So I understand how sometimes (okay, maybe almost everyday) in this mess it can just feel like you are sinking without a lifeboat but we've been there and have been able to pull ourselves out. Hugs:)

  9. Stacey--I can't imagine what it would be like for three people in treatment! We can barely handle one! I have a lot of respect for you and your family. That sinking without a lifeboat feeling is the worst--though inevitable at times--I think you just hit a point eventually where you say, Ok--there's nothing we can do about it, so we just keep going. It really is just a matter of "We'll make it work!" Stressful and tiring often times, but I don't think that means a family can't be happy. You guys seem to be in that same situation as well. Just keep going and be thankful for help when it comes along, right? :) Hugs to you too!

  10. Hi anonymous--sorry for the late reply. I definitely struggle with the panic, anxiety and depression issues a lot of us have. For me, some is due to the bartonella, but a lot of it is situational as well. Therapy did wonders for me during my first and half of my second pregnancy (we ran out of money for me to continue with sessions), though I stopped taking anti-depressants during both pregnancies at the suggestion of both LLMDs and my ObGyn. Both felt that approved use of anti-depressants was still too new and needed to be studied more, and that even though I COULD use them if things got dangerously bad or out of control, they would rather I stayed off. Some people can't, though, and it's actually safer to be on meds than without. I think it depends on your history.

    I weaned off of the Celexa I was on, and agreed to just try without and see how it went.
    I was monitored by my psychiatrist throughout, and we just kept an eye on my moods.

    I did have some increased depression during and postpartum, but mostly had trouble with anxiety. I had panic attacks pretty frequently during my third trimester, but they didn't last long and I tried to keep things in perspective by assuring myself that I had good reason to be on edge--I was about to give birth for the first time!

    Regardless, I had my antidepressants ready to start immediately and did so the day after I delivered my son. And to be honest, I hit up the Ativan bottle a couple of times when I got super panicky and just needed to pass out.
    Within a few weeks I balanced out and can't say I had a remarkable downfall at any point. In fact, things got much better for me mentally once I was on antidepressants and the "baby blues" subsided. I plan on having the antidepressants ready again when I deliver this next baby. There's a chance things wouldn't escalate, but I don't want to chance it and would rather just enjoy motherhood as a mentally stable human being. ;)

    I'll post more on the topic as soon as I can--I like this idea for a post, as it's a good question and something many of us struggle with.