Tuesday, October 28, 2014

The Lyme Pregnancy Journal Is Back

Hi Friends,

I've been entertaining the idea for a while, but tonight I decided to open up the LPJ and pick up where I left off a couple of years ago.

I will start by saying that I am not, I repeat, I am NOT pregnant (don't worry, Mom!), but a few realizations have hit me over recent months and I'm inspired to write again:

1. I have kept up with current protocols and treatment guidelines, and some of them have changed since I began this project four years ago

2. I still get just as many emails from women who are pregnant or considering becoming pregnant as I did when this blog was active. This tells me that current resources are still lacking, and I want to help if I can

3. When I was pregnant, I was IN it. Everything felt urgent because I was sick, hormonal, scared as hell, and man, looking back on these entries, you really got a play-by-play of my life, which is kind of weird but also a little cool because I immediately rehashed doctor info and explained bizarre physical symptoms. I am here now to say that the retrospective portion of this pregnancy story will be just as helpful. There are things I would have done differently. Some the same. I would have prepared more for life AFTER baby, which I will get into later

4. I try to stay off of the Lyme/Facebook forums as much as possible, because they either depress me or make me want to kick people, which says a lot because I'm CLEARLY a lover not a fighter, and besides that, I don't waste my spoons! When we start these health blogs, I'm not sure we all realize how greatly our words can impact a reader, so while it's good to be able to vent our frustrations about chronic illness, if we are spreading fear, negativity, or inaccurate information in the process, we are not really helping our healing cause. That said, the doom and gloom in Lyme Land is bringing me down, and I'd like to counteract that with a little dose of positive realism and sprinkle in some hope. The beautiful thing about having the internet AND freedom of speech is that, while I may (respectfully) disagree with some sentiments about never being able to have kids while battling Lyme, I can offer you the other side (what you're hoping is true in your heart or else you would not be reading this blog): If you feel up to the challenge, yeah you sure as hell can

There are a whole bunch of pregnant Lyme moms this month-- more than usual have reached out.
I thought it might be a good idea to have an old school Q&A post similar to the entries from the beginning of the LPJ. Within the next week I'll compile a list of my most received Lyme pregnancy questions and answer them here. In the meantime, if you have any questions you'd like answered, please post them in the comments section or email them to me asap: lymepregnancy@gmail.com if you're not into posting publicly.

I look forward to hearing from old friends and making new ones. I hope you are all doing well and feeling as healthy as can be.

*Note: My brain isn't what it used to be. Mush and vertigo after ten minutes of nighttime computer, so please excuse any errors. It's not laziness-- just the best I can do until I start making money and can hire a proofreader ;)

Tuesday, August 20, 2013

New Blog!

Hi Friends, It's been a long time. Over a year, in fact. Yikes. My eyes are crossing from a couple hours worth of typing, so this post is short and sweet. First, thank you so much for the emails and comments you've sent to me. Lately, I haven't been able to return as many as I'd like, but I have a bunch of down time now and will get back to you asap. If you've sent me an email and I haven't responded, please send another if you'd still like to chat. As for the updates many of you have requested, I have some good news: I've started a new blog that focuses on family life, treatment, raising kids with a chronic illness, etc, all from a positive perspective (I hope! haha). I would love it if you'd join me over at Leave A Light On (http://lightsonlyme.blogspot.com/) Thank you! Sara

Wednesday, April 4, 2012

Better Days Ahead

Well, my short break turned into a long one, but not for depressing reasons. When I ended my IV treatment early this year, the hearing issues I was experiencing cleared up almost immediately, (we're thinking it was an issue with the antibiotic itself) and surprisingly, I began to improve on my own.

I've said many times that the people who have had success with Lyme treatments are not hanging around the internet talking about Lyme Disease; They are out living and moving on. Most want to leave the disease behind and not look back. Over the past few months, that's exactly what I was doing--living a (mostly) normal life with my family.

We were blessed with an early spring here, and I can't begin to describe how grateful I feel to have been able to run with my kids outside, take them to parks, do simple tasks like grocery shopping or running mundane errands. These activities did not leave me bed-ridden for days or weeks afterwards. On a personal level, I was able to reconnect with old friends, make some new friends, go out on a few dates with my husband, and even shop for some clothes that don't have elastic waistbands!

My husband found a new job that he loves, and with the help of our part-time college student, I've been able to care for the boys much better than I've been able to in the past while Mike is at work.

Unfortunately, I began a setback about three weeks ago, but I'm refusing to let it get me down. With the help of a new doctor, I am getting back on meds (antibiotics and herbals), and I will continue to hope that a day will come where I will experience more healthy months than sick ones.

I've received many kind notes lately asking about my whereabouts and if I will continue this journal. The answer is yes, I'd like to keep this open to help and hopefully share some stories from other women who have gone through a Lyme pregnancy. In the meantime, I'm compiling a list of FAQs I often answer and will be posting them within the next few days.

Thanks for your patience and support. It's helped tremendously.

Wednesday, December 7, 2011

A Short Break

Hi All,

Taking a quick break so that I can recover, or at least figure out what's going on with my head and ears right now. I've been doing twice daily treatments of Vancomycin, and now I'm experiencing some vision and hearing problems. Whether it's due to ototoxicity or if I'm just having another neuro flare (this time in the head) is a mystery to me and a couple of other doctors.

All I know is that this isn't a mild case of ringing in the ears that can be described as a pesky case of tinnitus. I've had that before in the past, and you just learn to adapt and ignore it. There is a full on whomping helicopter in both of my ears, and even whispers sound like someone is screaming right into my ear canal. There must be an inflamed nerve in there or something--I never knew sound could be so painful. Balance is also way off--if I turn my head too fast, I fall right over. Thank God for Zofran, because, without it, I'd probably be hurling from the spinning sensation.

I know none of this is pregnancy related, but anyone have any experience with symptoms going haywire after starting IV treatment? I'm hesitant to blame everything on a herx, as that's very general and I'm not sure it would have come on this late or lasted this long, however it would be reassuring, as 'herx" sounds better than "damage" any day.

Drinking lots of fluids and infusing bags of saline to help clear my system. Hoping to be back on my feet again soon.

Thanks for your patience with the unreturned emails and infrequent posting. Will be back asap.


Wednesday, November 23, 2011

Worst Case Scenario: Treatment After Lyme Pregnancy

Whenever I get nervous about anything (not just health related), I ask myself, "What's the worse case scenario?"

I had to ask that question many times throughout the course of Lyme pregnancy, and as someone still undergoing some heavy treatment, I don't anticipate stopping anytime soon.

During pregnancy, I worried about not being able to care for my babies. I feared the dreaded relapse, and I didn't even want to think about what would happen if I passed on the disease. Worst case scenario? I'd find help in advance, whether it was family, friends, or if we were desperate, paid. I'd push through another round of treatment with the upper hand, as I've already seen rock bottom and and it's not my first day on the job, and of course, if my babies were ill, we'd treat immediately, let the guilty feelings go, and put all of our efforts into fixing and moving on. Being rational as often as possible is the key to getting through this journey smoothly.

Often times easier said than done. As I'm writing this, I'm tucked away in a bedroom, hooked up to an IV, listening to a chorus of cries and wails coming from the living room. My husband is juggling both unhappy babies, as well as a whimpering dog. Quite the symphony. Undoubtedly, someone has a stinky diaper, someone is hungry, and everyone is overtired. Nothing I can do at the moment, though, and quite frankly, there's little I can do to contribute for the time being. Anxiety and guilt on my part? Oh yeah.

Worst case scenario? Twenty-eight more days of hearing my family soothe the Crying Choir while I blast out this last round of Vancomycin. That's less than a month. Will I be cured? Probably not-- sorry, I'm not optimistic anymore--however, I will feel better than I do now, and even now, I've certainly been much worse off than this.

I was afraid to start this treatment. What if I'm knocked completely on my ass? What if I can't find help and I can't handle everything on my own? What if I'm leaning too hard on family, and they start to resent having to help all the time? It's only been five days of treatment, and so far, all of these things have happened at some point (sooner than I expected!) You know what? We've revised plans, had heart-to-heart talks, taken it day by day, and we've made it so far.

This is all about perspective. Some days, during pregnancy and beyond, will be painful and scary. We are literally fighting to get our lives back. When there are children in the picture, the stakes are higher, and everything seems to matter a million times more. I've noticed that 90% of the time, in retrospect, it's never as bad as I feared it would be in my mind.

For me, relapse has been no picnic, but these symptoms aren't strangers, and I'm doing what I have to so they'll go away again. I have a lot of love and support, especially during the hard times, and despite some discomfort, I'm pretty happy. My kids bring me joy and comfort, and I bring the same to them. Not the kind of life I had in mind for us, but who knows what will happen down the road. Worst case scenario: I stay sick. I wouldn't trade this life for anything, even if it is kind of broken.

Thursday, November 10, 2011

Positive Lyme Tests After Pregnancy

(Photo taken with Instagram: MsBirdieB)

It's been a couple of weeks, and I'm still trying to work out details with doctors and insurance for my last round of IV treatment.

I started questioning the need for IV in the first place after a solid week of improvements--I definitely bounced back from all of the viruses our family passed around, and I've been able to be pretty active with the kids. Definitely not the same sick person I was when I last wrote, however, many annoying symptoms remain, mostly involving joint pain, blurry vision, memory, and vertigo.
I'm sticking with the plan that if insurance covers me, great, and if not, I'll move on to plan B. What's plan B? Who knows--right now every last bit of my energy has gone into plan A. Ha!

I received my test results by phone today.
Initially, Lab Corp gave me a positive IgM band 23.
Igenex provided me with a positive IgM for 41, and an indeterminate for bands 31 and 39
I also got a positive IgG for band 39, 41, and 58

Apparently, I have put all co-infections to bed, because those were negative.

Here is a link that explains what the bands are, in case you're new to IgeneX or western blot testing.

Here's the bottom line:

Could this all be a result of pregnancy? Maybe, maybe not. It's hard to say, because I don't think I was ever in remission before or during both of my pregnancies. I truly believe that no one (ILADS or IDSA followers) knows enough about the disease at this point to pin down where things go wrong or why this disease is so hard to treat. Everyone seems to have a theory, but in reality, most are throwing solutions out there to see what sticks. That's why treatment is so "individualized."

I think a lot of things come into play in my case. Yes, the pregnancy was hard on my body; Pregnancy is hard on a healthy body. No, I wasn't considered "cured" when conceived. I've also dealt with three viral illnesses over the last couple of months, and I've also struggled with finding an antibiotic that works well for me. I've been run down, stressed, and lastly, it took over ten years to get my Lyme diagnosis. Who knows what the hell goes on in a body that's been infected without treatment for so long.

What I do know is that the only way to get through this is to remember that, even though Lyme hurts in every aspect, it does not have to dictate your outlook. Three years ago, I would curl up in a ball and feel sorry for myself on the bad days and come up with all sorts of dismal thoughts about how I would never be able to move on with my life. I didn't realize that as I was thinking these thoughts, my life was moving forward anyway, whether I wanted it to or not.

After a bunch of life changes, financial distress, and two kids later, I am still here. My family is still here, and it's grown. Despite a few hiccups and scares, I am relieved that my children are healthy, and I can't imagine a world without them. So, instead of allowing the fear to keep me from enjoying what I have, I decided to push through and live as if I'm healthy. When I need to rest, I rest. If I need more treatment, I need more treatment. Someday, maybe I won't.

As cliche as it sounds, when you have a chronic illness, you have to take it day by day. Today sucked, and I've spent most of the afternoon curled up in a chair with a baby in one arm, trying to complete this post. But yesterday, we took both kids to the playground in our neighborhood. I photographed the kids, helped Wyatt go down the slide eight million times, and giggled with him as he learned that he could blow the seeds off of a dandelion. It was truly a fun experience that made me appreciate all that I have. My bones ached, but whatever, they would have ached at home, too. My vision was extra blurry, and as I teetered down the street and my husband asked how I was feeling, I responded, "I'm on a boat!" (From the funny SNL video that's too explicit for me to link to here.)

Since I've had kids, I've stopped asking so many of the "why" questions. I'm sick. I'm not sure how long it will last. I will do what I need to do to get better, and I will love my family and have the best time that I can as I go through treatment.

Friday, October 28, 2011

Updates After Pregnancy

The number one question this past month has been, "How are you feeling?"

We're all terrified of the dreaded relapse or flare after childbirth; some women have a setback and some don't.
Emmett turned three months old yesterday, and up until a couple of weeks ago I was doing great. I recently had a major crash that my doctor feels warrants one final round of IV treatment, but neither of us attribute it to pregnancy or delivery.

I'm not sure if any of you deal with this during cold and flu season (please tell me I'm not the only one this happens to!) but the smallest cold sends my immune system on a rampage, and my Lyme symptoms emerge and flare to the point where I'm stuck in bed or taking a trip to the ER for scary heart rate issues or paralysis. It usually doesn't last long--a week or two--and I forget about it once I'm up and moving around again.

I now officially view children as little germ covered illness spreaders. In the last month Wyatt has shared with us three different viruses, because he insists on touching other sick kids and everything dirty in every public place. The first cold I bounced back from, the second left me with a nasty case of vertigo and nausea, and the third left me wondering if I will ever come back from this. I would definitely consider this a crash: vision so blurry I can't drive (which is not a bad thing, since last week I was pulling out of a parking lot and couldn't figure out which side of the road to drive on), horrible bone, muscle and joint pain, and sounds make my head want to explode. There's a much longer list of symptoms, but you get the idea, plus my energy is limited. I've been writing this post little by little for three days because computer screens are making me extra dizzy.

I was not thrilled with the idea of another eight weeks of IV, but my COBRA runs out at the end of December, and since my deductible was astronomical, I want to take advantage of any treatment I can get while it's covered. If it's covered. If this doesn't work, I'm swearing off antibiotics for a while and will try a more natural approach. In the end, my doctor convinced me that this was the way to go, because I was nowhere near remission territory when I got pregnant, and I ended up having two kids back-to-back. He wants to get a good, strong start to what is essentially the beginning of "real" treatment. It is what it is--no regrets.

Just waiting for current IGenex results to come back. We tried getting a positive through Labcorp, which is not as sensitive, and I only had one active band (23) come back positive this time around (my original IGenex tests came back very positive for Lyme and Bart and questionable for Babesia). If insurance won't cover this, I won't do the IV, plain and simple.

Bottom line: stay the hell away from sick people during the cold months, especially kids! I know, easier said than done.

That said, I have to say that I bounced back very well from pregnancy. An hour after I delivered Emmett, a new nurse came in the room and cheerfully asked if I was going home that day. When I told her I'd just come out of surgery, she thought I was kidding. I felt that much better immediately.

Granted, there's a lot to be said for pain killers, but I continued to improve as I spent more time at home, drug-free. Here are some things I've been able to do since I recovered from surgery (about two weeks after delivery):

-Carry and care for babies all day
-Chores around the house--dishes, vacuuming, straightening, laundry, etc.
-Cooking and baking
-Actively play with Wyatt, which includes chasing, rolling, dragging, and lifting
-Push a stroller around the neighborhood
-Shopping (Oh, how I missed you!)
-Walk the dog around the yard
-Go out for dinner and drinks with my husband
-Spend the day out doing fun things, like going to the flea market, visiting family, going to parks and farms, etc.

Some of the activities required rest the day after, but I can honestly say that until very recently, I've been able to keep up with healthy mommies in the activities department, and I've been having lots of fun.

There are dark days, and there are wonderful days. I choose to focus on the positive, and I believe that I will feel better and be active again soon, regardless of whether I get approved for the IV. I could use some discipline in the diet and taking good care of myself departments, but I'm working on it. How easily we forget that we've been ill once we start feeling better. I'm a work in progress, and there are good days ahead.