Thursday, January 20, 2011

Lyme Pregnancy Q & A: Heather's Story




Heather's had her fair share of struggles with Lyme. She's a huge inspiration to me, as she's still in the beginning stages of her treatment (remember those extra scary dark days?) and still manages to care for her kids, all while battling illness, making a difficult move across the country, and doing what's best for her family, even when it means making tough decisions and sacrifices. Here are some of her thoughts based on her Lyme pregnancy experience:

How long have you had Lyme; When were you diagnosed?

I have had Lyme disease since 1989 when I was bitten by a tick in the Sierra Nevada mountains in CA. I wasn't diagnosed until mid - 2010 and my real, debilitating symptoms started in 2007.

Were you treated before and/or during pregnancy? If so, what were/are you taking?

I was not treated before or during either of my pregnancies because I didn't know I had Lyme! I suspected I had something that could be killed by some sort of anti-fungal or antibiotic so before my second pregnancy I was on Olive Leaf Extract and Lauricidin. DURING my second pregnancy I was on Lauricidin, Vit. D, and prenatals. But I had no idea I had Lyme or that whatever I "had" could possibly be given to my unborn child. I'm thankful for (so far) very healthy girls.

How did you feel physically during your first trimester?

Both of my pregnancies I was so so exhausted the first trimester. I could hardly do anything. I was also so nauseated that I threw up until week 21! I tried all sorts of anti-nausea meds and none really did the trick.
Second? Like I said, mid-way into the second trimester I still was throwing up. But once it passed I felt great!!! NO fatigue, no joint pain, everything was awesome physically! My husband and I actually thought that being pregnant was the answer to avoid all the pain and fatigue I had been in.
Third? Both pregnancies ended up with me having kidney stones in the third trimester. There isn't much they can do for you when you're pregnant so I just had to stick it out until they passed. And toward the end of both pregnancies I was pretty tired.

How did you hold up mentally during your pregnancy?

First trimesters I was always depressed. Probably because I felt so ill with no "light-at-the-end-of-the-tunnel". And my second pregnancy I was also depressed in the third trimester but it went away fairly quickly after my daughter's birth. Again, since my Lyme symptoms had disappeared during pregnancy and I also didn't KNOW I had Lyme, there wasn't much to worry about. I think if I got pregnant again now that I know what disease is hurting my body, I'd worry so much just because those hormones make you so imbalanced! Crying and irritable and for me, irrational sometimes.

Did you experience a flare-up in symptoms after delivery?

Most definitely, but not until about 2 months after the birth did the flare-up symptoms creep in. Joint pain, fatigue (not your normal baby-sleep-deprived state of mind), mental confusion, and twitches.

If so, how severe has it been, and what are your limitations?

After my second baby, I was diagnosed with Lyme and within a few weeks of finding out, I started having seizures for the first time. But before that, I was debilitated enough. The joint pain was manageable (meaning I could work through pain) but the fatigue was impossible to manage. There really isn't anything you can do about being so fatigued you can't move. I was confined to the couch or bed and my two littles had to be cared for by loving relatives and good friends who would come to the house during the day until my husband would get home from work.

What was the hardest part about pregnancy with Lyme Disease?

I think just not feeling well but having to care for another child and thinking that you'll have TWO soon and now sure how you'll feel physically after the birth.

What is the hardest part of being a mom with Lyme disease?

The hardest part of being a mom with Lyme disease is the physical limitations. Most moms have an instinct on how to balance life with one or more children alongside the normal requirements of home or work life--multitasking. With Lyme, I found that I went from someone who multi-tasked very well, to someone who could NOT do more than one thing at a time and could only really BARELY do the bare minimum for my kids (feed, change diapers, and put down for a nap). My sole focus went from being my kids' mom to being someone who could barely even care for myself. The GUILT that comes with that is almost unbearable. You feel as though you aren't good enough for your kids and that they are missing out on a normal childhood; wishing you had the energy and state of mind to read to them, enrich their little learning brains, and giving them the physical loves and hugs they need. I find myself needing to tell my 3 year old multiple times a day, "No, you can't sit next to me, you need to sit on the other couch" just because of my pain level. And it kills me every time. I try to take advantage of any "good" moments I have during the day to encourage, speak kindly, and give hugs to both my girls.

One of the toughest decisions my husband and I had to make was to send our oldest daughter (only 3 1/2) to stay with her grandparents for a month so I could get the rest I needed before making a big move across the country. Thankfully we felt comfortable with my parents caring for her and trusted them, but still, it was hard to be away from her (they lived out of state) for that long. But it was a wise decision because my body was able to get some rest that it needed at the time.

Do you have help when you need it? In what ways were you able to reach out for support, and have you been successful?

Most of the time we have had help when we needed it. When my husband was deployed to Iraq, I was at one of my sickest times and my family really stepped up to help me. Even some close friends would step in to chop veggies for that night's dinner if my wrist joints hurt too much to do it or even just stop in to clean my bathrooms or do other various household chores every once in a while.

When my husband was home and a year or so later, I became really sick again and we found that our church friends really served us with earnest hearts. They found time in their busy schedules to come babysit the girls while I lay in misery on the bed or couch, or made dinners for us since my husband would get home too late to make a meal for us (I was too weak and fatigued to), or even just come and clean the house for me every week or so.

We have also had really supportive family even though they live out of state. They have flown multiple times to stay for weeks at a time to be "live-in" help for us. We have always been honest with them as to just how bad my illness is and they have never been unsupportive or questioned my Lyme disease. Even with conflicting information out there, they have always trusted us and seen with their own eyes just how bad this illness can be.

Looking back, would you have done anything differently (treatment courses, outlook, doctor communication, or would you have waited longer, for example)?

I think in my case, I had a gut feeling Lyme was the culprit for my sickness but I was so scared of it that when I was initially tested and it came back negative, I just accepted that. But deep down I knew it had to be Lyme and I wish at that point I had sought out wiser LLMD who could have diagnosed me properly. If I had done that, I MAY be feeling better today. But I know God has His plan for my life and sickness and He has me in this season for a reason. I definitely have grown a lot through it even though it's the hardest thing I've ever had to go through.

What's the best part about being a mom? Are you still able to enjoy motherhood even when you're feeling ill?

I love that even though I am feeling rotten, I get so much joy out of both of my little girls. My 3 year old is walking entertainment and I find myself writing down multiple quotes a day to tell her dad when he gets home from work. She makes me laugh all day, even when I'm feeling my worst. And my 10 month old is all smiles most of the time and I just love enjoying both of their personalities. Even when I feel my sickest, I can still enjoy their cuteness. My children bring SO much joy to my life that I do believe it keeps my spirits up even though my physical life is down. I've never regretted having my girls even though I'm ill.

How was your experience with doctors and hospitals? Were they accommodating? Did they understand your Lyme?

I've only had to mention Lyme to a general practitioner a few times because of how recently I was diagnosed. But the time I mentioned it to my doctor a year or two before being diagnosed, he tried to convince me that it couldn't be a possibility even though I had been bitten by a tick and gotten the bulls-eye rash. But, being a humble man, after I explained what I knew of the disease, he was willing to test me; it just wasn't the right test.

Now, trying to get a general doctor in the new place I live, was more nerve-wracking THINKING about it and whether I was going to be met with kindness or animosity than it was actually meeting with the new doctor. I was blessed to find a doctor who didn't know much about Lyme and felt compassion for me seeing me in a wheelchair at such a young age. He said he was willing to work with my LLMD and also said if there was anything else he could do for me, he would.

What advice would you give women who are considering having a baby?

I guess I would give the same advice I'd give to anyone considering to have children -- make sure you're ready for all the work it takes. It truly takes up every ounce of your body -- especially those first 2 months!! Know that having a baby is hard and even more so when you're ill. BUT -- it also is one of the greatest joys. You'll never regret having children. And I recommend having a great support base as you'll most likely need help. And most definitely accept help when it's offered....this took me a while to do but as I've lessened my pride I can see just how much I truly need/needed it.

As far as the possibility that Lyme can be passed to your children -- well, in my case I didn't know I had it when I had my children. But I am here to say that both of my girls are really healthy. We do suspect my oldest MIGHT have Lyme (only because of one symptom so far) but according to my LLMD, we wouldn't do anything about it until more symptoms arose and all other medical tests were exhausted. He said not to get stuck worrying about every little ache and pain but to let her grow and that we will "know" what to look for and when to seek help.

To learn more about Heather and follow her Lyme journey, see her blog, Today I Feel Exceptionally...

14 comments:

  1. Wow, this was a really thorough and informing interview, thanks for sharing!

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  2. Thanks for sharing.

    Heather, I can relate to a lot of the things you've said, about being too fatigued and weak to do things. I have also had a lot of times where family has come into town, to just be live-in help for a short period, or in anticipation of something that needs to get done. And I don't even have kids.

    They can just see how sick I am, that nothing is getting done, and they know they need to be there.

    Luckily, I am doing a LITTLE bit better, to where I am cooking meals more often. But I am still pretty disabled by this.

    I have a sort-of random question, for Sara, Heather, and all the Lyme Moms here. Do you all have the really bad darkness around or underneath the eyes? Some Lymies have it, some don't.

    That is one of the things that really freaks me out as I contemplate becoming pregnant. I look in the mirror at my face, and what I see scares me, because I look like I'm addicted to heroin or like I'm dying (because of the darkness around the eyes....trust me, if you saw it you'd understand). The thought of being pregnant with my face looking like that scares me...just the image of seeing a pregnant woman, with the belly, and those dark circles. It just doesn't seem healthy or natural.

    If I knew that someone else had them, and was pregnant, and somehow survived and the baby survived, I'd feel better. I know it sounds silly, but the visual of it just bothers me, because the dark circles do match the ickiness I feel, and that feeling like I'm about to just collapse and sleep my life away, etc.

    That is just one of the fears I have that I can't really get over. That I am just too sick to do this (carry a baby, be pregnant). Even though I can function in some areas, it just still unsettles me...the idea of getting pregnant when I even LOOK this sick. I can tell the dark eyes freak some people out.

    -Hoosier

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  3. I think Heather's story helps us realize two things: First, if you find out you're pregnant during your beginning stages of treatment, you are in for a rough ride for a while. I give her loads of credit--she is one seriously strong woman-- she just moves forward and does what she can because she has to. And you can do it too.

    That said, don't torture yourself by trying to have kids when you're feeling awful. She didn't know she had Lyme when she was pregnant and didn't completely fall apart until after pregnancy. I'm not sure she would have tried for kids with a fresh diagnosis and a PICC line in her arm...(this is just a guess--I can't speak for Heather).

    Second, if you're considering having kids, make sure you're ready. If you're still bedridden most of the time and you're hating life, now might not be the time to conceive. Support systems are crucial, as there will be days where you will struggle with caring for the kids.

    Bottom line is that you will love them no matter how you're feeling and what you're able to do with them. They will bring you joy and keep your spirits up. They will love you unconditionally and won't even remember that you were on the couch instead of bouncing around the house with them (at least for the first 5 or so years anyway).

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  4. I do agree with Sara. If you're bedridden, now is most likely not the time to conceive.

    And yes, if I had been diagnosed before I had my kids I would probably have waited. But before being diagnosed, going through ups and downs of feeling well/unwell, we definitely waited until I was feeling more "well" before we tried to have children.

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  5. Hoos:

    I had a similar talk with my therapist about the fear of looking and feeling sick forever. I'll probably butcher what she told me--but the conversation went something like this:

    Me: I can't even stand to look in the mirror because I don't even look like myself at all. It's bad enough my body is failing--I don't want others to see I'm failing.

    Dr: But is your body really failing? And does that really make YOU a failure? You're thinking in black and white terms. When I first saw you, you could barely walk. It took you five minutes to get up the stairs. You were confused, twitchy, and very pregnant. Many days you couldn't even drive to see me. Were you ever worse off than that?

    Me: Yes, a lot worse. I was totally paralyzed in a wheel chair, and for the first 7 months of treatment, I literally made peace with myself and life because I was convinced I was dying. It hurt that bad.

    Dr: So in the span of two years you went from paralysis and near death to twitching and walking slowly up the stairs. What happened on your most recent bad day?

    Me: My arms went numb and I couldn't hold the baby. I had to give him to my mom and take a nap for a few hours. I woke up twitchy and feeling like the shittiest mother on the planet.

    Dr: How long did that last? A day? Two days? A week?

    Me: About a day and a half. Then I was alright--just really fatigued and a little twitchy.

    Dr: So, even though you've made tremendous progress, you have a setback or feel really ill for a few days and all of a sudden you're mentally back in the wheelchair and cursing your life for being permanently sick all the time? On top of that it makes you a bad mom for having to rest? Is that fair? Can you maybe try to tone down that constant fear of relapse and look at your physical state more realistically?

    Me: So I'm a mom who deals with some pain and down days, but it will never be as bad as the wheelchair days, because I've gotten through all that. I should really only focus on how I'm feeling THIS moment (and not how I was or will be in the future) and realize that it's temporary or I'll at least get through it.

    When I look at things that way, I'm a success story and not a sickly looking chronically ill loser.

    Sorry that was so long... but do you see what she was getting at?
    We should try not to fear our illness, especially when we're beating it. You've come a long way, and it will only get better.

    That said, I'm totally with you on the eye thing. It's horrendous-- I don't even let people take pics of me anymore because I look like a raccoon, and my self esteem gets smaller and smaller (while my ass gets larger and larger from inactivity). What's worse is that if I look up close at the circles, they're friggin' scaly looking. Like I'm dead AND drying up. The good news is that if you have a baby, people will just assume you're realllly sleep deprived. "Oh you poor thing--you look so tired!" And you're like, "My lord, you don't even know that half of it..." ;)

    Cheap Covergirl concealer in the tube--it's ghetto, but it's like circle-killing putty. I'm not sure it makes me look any better, but at least I'm putting in the effort now. ;)

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  6. Thanks for the comments. Having you all's support/input/opinions is really neat, because I look up to you gals, silly as it sounds.

    Sara, that makes me feel better that you do experience the dark circles too. I think I just needed to know I'm not the only one.

    I will definitely be waiting to conceive until I feel I'm at my personal best. But that's the thing.....I am just not sure how much "better" I'm going to get (not trying to be pessimistic, because I am usually pretty optimistic about this whole thing). Just being honest. I'm not saying I don't think others can make a full recovery, but my worst point was 9 1/2 years ago (the whole thing was sudden onset), and since then I haven't seen any indication that this disease will ever fully go away for me, after years and years of Lyme treatment. It will probably be something I'll always have to manage.

    So that leaves me with these dark circles, I guess. What's funny is that I'm well enough that I can pretend to be healthy, sometimes even for a full day or a couple days....but the circles are still there (and the fact that I know I'm pushing through something and will need a week of recovery). So I'm not bedridden by any means (I realize those comments were general though and not necessarily just for me).

    I definitely feel emotionally ready for a baby, and even almost physically ready, in terms of being able to meet a baby's needs (having the stamina) though I know it won't be easy. But the circles are still there, as bad as ever.

    Yeah, the pictures bug me a lot. It's like the camera amplifies them, and I can't bear to look at the pics. I feel my own pain, looking at them!

    I do use this coverup....Physician's Formula brand, in a lipstick-like tube. Yup, it's like a putty. I really shelack it on!

    At this point I know I'm rambling and I'm not really expecting anyone to reply, so please don't feel pressure to!

    Interesting what you said, Sara, about not fearing our illness. I am pretty optimistic that I won't get any worse, or be as sick as I once was. I'm currently operating at about 30-50% of my old self, which is much better than 5%.

    One thing I am worried about though is something silly causing me to relapse to a lower point (like a vaccine did once....please don't any of you get one!).

    I am also afraid of waiting too long to have children. I don't know why. I am only 27! But for some reason, I feel like my biological clock is moving faster than the average woman's. It's like this sixth sense I have. I guess I just observe that my body isn't bouncing back from things like it used to. I seem to be aging a lot, all of a sudden. Sigh.

    Anyways, thanks for listening.

    -Hoosier

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  7. Yeah, I know what you mean about feeling like your biological clock is moving faster. My LLMD actually said Lyme causes you to age prematurely but that treatment can at least slow it down. I am 28 and already have arthritis in my spine!!! It's mild but hopefully treating Lyme will help slow it down.

    And honestly, I'm afraid to look in the mirror too closely so I haven't looked for dark circles yet :) What makes me the saddest is looking at pictures of myself a few years ago before I got really sick. It's like 2 different people. But my husband discourages me from getting sad about it and says he loves me and thinks I'm beautiful the way I am. So I suppose that should be good enough :)

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  8. I've had three children before I knew I had lyme. Thanks for sharing this. It's a scary ride, and now I'm worried about my 3 kids. My last baby, whom I breastfed when I was at my sickest point, had lyme symptoms straight out of the womb. She is now in remission and I will have her tested when she gets a bit older.
    It will kill me if all 3 of my kids are infected. They are my life and love, and I will have such a hard time seeing them sick like me. I pray daily that they can be spared.
    By the way, congrats on being pregnant again. I'm so happy that you are feeling good right now!

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  9. Thanks for the interview. This is reassuring. I haven't been able to get my OB to prescribe me antibiotics with my pregnancy. She insists that I'll pass my natural antibodies to Lyme to the baby and that she'll be all right. I don't think I have any antibodies to Lyme; so I am constantly worried. But hearing that someone was able to give birth to two healthy girls even though she wasn't treated and didn't know she had Lyme at the time is very encouraging and comforting...

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  10. Brandimc: Would you be willing to share your story with the LPJ readers? If so, please email me. lymepregnancy (at) gmail (dot) com. I'm especially interested in what symptoms you saw in her as a new baby. I can email you some Q&A style questions. It would be a great help to all of us.

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  11. I'm not sure how I feel about a woman conceiving when she knows she has Lyme. It's not just about having the stamina to care for children, it's about potentially passing on a really terrible illnes to them. It is heartbreaking to feel like you cannot have children but possibly more heartbreaking to think of choosing to have a child who will suffer in the same ways you have.
    I'm not judging anyone. I know the strong desire to have a child. These are just my thoughts.
    I didn't know how to do the Comment As. Nothing seemed to work but anonymous. My name is Molly.

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  12. Hey Heather! Wow what an inspiring story. I know this is an older post, but for those still reading and coming across this.... I can relate. I was bitten in 2009 and was diagnosed last year in 2015. Ive gone through a wonderful pregnancy and gave birth to a very healthy baby girl in 2011. I never looked up the complications Lyme could have during pregnancy b/c I didnt know I had it then. Well now I do know and am pregnant again. Totally freaked me out! But one day I told myself enough worrying! Im almost halfway through the pregnancy now and things are going just as well as the last. I just do my best to keep myself healthy. I breastfed my last child as well and felt fine during that time. It wasnt until I stopped when I started to get sick. Ive come to find also that stopping birth control or messing
    with your pill regimen can affect your Lyme from the change in horomones. Lol! Thats how I found out I had Lyme. Trying to push back my period for my upcoming vacation! But as far as pregnancy ladies. Dont let it stop you from starting a family. Try to get as healthy as you can before trying and I feel your body will naturally do the rest as far as protecting the baby. Best wishes to all of the mothers out there struggling with Lyme.

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