Worry

I usually leave the worrying the family to Charles, but I am finding that this process is bringing out more worry and more doubt than usual. 

I really concerned about what is going to happen when I stop Celebrex.  Last week I took a half dose (which is really a full dose for most people) and by day 5 I was hurting all over and it was almost impossible to walk or use my hands (aka move or work).  I have to be off for two weeks before we conceive.  Which means I will be fully off in almost exactly 4 weeks (a little less).  I have to taper for at least a week (I thought it had to be three, but I realized I can shorten it). 

It is likely I won’t be able to work after I stop Celebrex.  If I don’t start prednisone, it is likely this could continue through pregnancy (unless I have remission).  I am not sure what that will be like for me.  I will probably check my email each day, but the rest will be some sort of paid leave.  I have 6 weeks of vacation time and some sick leave left, probably a week or two.  However, knowing I will need leave after the baby is born, it is all money out of our pockets.  I don’t have to worry about the effect on my career, which is a relief.  Ultimately we have the money to have me not work for much longer if we need to, but it is weird knowing that I won’t be contributing.  It is also hard not knowing how long it will last for.  Even after the kid is born it might be hard to work and then we’ll want a second one. 

The biggest worry I have right now is actually how being in pain with affect Charles.  I am not one to talk about my pain a lot, but when I am having a particularly bad day I might whine a little about it.  Charles then gets really worried about it.  Unfortunately, the alternative is not talking about how I am feeling at all, which is very isolating and isn’t good either.   Charles’ response lately to pain has been “are you sure we should be doing this kid thing?”  Of course I am not SURE, but it seems like it is the right time.  I am not SURE I can handle the pain with grace, but I am willing to handle the pain in order to have a kid.  It is tricky though that for the first time, I am CHOOSING to be in pain.  It makes me feel like I shouldn’t be as upset or annoyed when the pain happens.    

A Harder Week

Perspective always changes how I feel about my abilities (or in-abilities).  When I have been feeling okay for a while, I start noticing all the things I want to do that I can’t do.  However, a week like this week where I have a really flared joint and can’t do much of anything reminds me of how capable I really am generally.  These harder weeks are few and far between and usually revolve around a flare of a newly involved joint in my arthritis.  This year has seen the onset of the right ankle/heel and my left big toe.  The reality is, most of the time I am feeling okay enough to do most anything I need to do around the house or socially (even if in a modified way).  Ironically, a harder week is just the reminder I needed about my overall abilities!

However, there are also down sides during this period.  I have to make some hard decisions about what I can and shouldn’t do while I am super flared.  Overdoing it while I am flared can quadruple (or more) the recovery time from the flare.  This weekend, we were supposed to go to a wedding of one of my college friends, but I had to decide that the potential harm to my body was too great to risk (it involved a very long drive and some walking).  When we have kids, the decisions will be hard as well.  I’ll have to cut back on my activity (knowing it is temporary) so that I can heal quicker.  This is when we will really have to pull in favors to ask for help.  Luckily, we are surrounded by amazing people.  Yesterday when I needed to go to PT, my friend Mo dropped her plans and drove me to seattle and hung around during my appt.  I am lucky to have people like that surrounding me. 

This is also a reminder of why I like to do what I can when I am healthy.  I might seem a little overzealous to Charles when I want to organize now for a baby a year away, but I think it goes with the necessary philosophy of using the strength/ability when I have it.  As much as I love relaxing, I sometimes get too much of it forced on me when I have flares.  The ability to clean is something that is harder for me to do when I want and it makes sense to seize the moment when it happens.  Again, this is something I’ll just apply to parenting and make the most out of the good moments so I feel confident taking my time to get healthy during the bad ones.  The more I think about it, although kids are going to up the ante, each of the temptations and problems are things we have already dealt with, just in a different way.  We already have a lot of physical and emotional tools to help us through it. 

Keeping Up with Kids

Last Thursday we were walking to frozen yogurt after dinner at Rock Bottom with a large group and my left toe and right ankle were hurting a bunch (more than they had the past few days).  It made it really hard to take normal strides and keep up with everyone.  But it is sometimes even harder to fall behind.  I found myself really pushing myself to keep up, which is a terrible thing for me to do.  I finally tried to wave everyone ahead and so that it was just clear I wasn’t planning to keep up, so that then I could go as slow as I wanted.  Unfortunately as much as I tried to be smart, the distance was just too far (even though I did it 10 days earlier) and after walking to yogurt I was dead tired.  Charles came and picked me up.  Despite all my efforts, I have had some pretty bad days since then, with my hips especially being flared (probably from having a strange gait as a tried to accommodate my ankle and toes). 

So, the point of this whole story is it makes me realize that the desire to keep up with my future kids will be even stronger than the desire to keep up with friends.  I think I have come to terms with the fact that my kids won’t really care if I am the one to chase them around the house all the time, but that doesn’t mean it will be easy to sit there and not be able to do the chasing.  I don’t worry about them missing out, I worry about me missing out.  Hopefully it will be one of those things we gradually ease into as the kid becomes more active so that it isn’t as hard as it sounds like it might be. 

The walk to yogurt was also a good reminder of the impact that one little surge of energy can have.  When we were at the zoo with Richard and Meghan recently, Richie ran off and wouldn’t listen to them when they said to stop (mostly he does listen, but 2 year olds will be 2 year olds).  Richard had the stroller so Meghan took off running to chase him.  Obviously, when Charles and I are together, Charles will be the designated kid chaser, but what if I am alone with the kids.  It makes me realize I may need to employ different strategies (making the kid hold my hand or the stroller).  Although I don’t want to be the rigid parent, and I COULD chase my kid if need be, I think when they start walking to when they start obeying more consistently, I am going to have to error on the side of being strict.  When I think about the effect on my kids, I think they would rather have to hold my hand in public then have their mom really hurt often from chasing them.  Again, hopefully we can ease into this.  Plus, Charles and I are really good at coming up with unique solutions to solve the problems my arthritis brings up, so I don’t think this will be any different. 

I'm So Excited, I'm So Scared!

Not only is this a great quote from one of the best Saved By the Bell episodes, but it is a pretty good summary of how Charles and I feel about parenting.  I asked Charles over breakfast what he is most scared about with kids and his immediate answer was “everything.”  I asked what he was most excited about and there was a long pause.  I feel the same way.  I am super excited to be a mom, but it is a lot easier to quantify and list my fears that to list what moments I am most looking forward to.  When I see mom’s interact with their kids I find I really want to be the mom, but I can’t tell you why.  However, listing things I am afraid of is easy, from having them be healthy, fit and active, to having them be full of self-esteem and ambition. 

I feel like this is where biology really helps out.  There is no reason I should be so baby crazy if I can’t tangibly come up with reasons for wanting a baby.  I consider myself a very rational and logical person and the feeling in my soul about wanting a baby transcends all that.  I suppose this is biology’s way of making sure we go through with this, even though it means discomfort and changing your life forever.

The other factor that helps is that I have obviously talked to other parents.  You don’t meet very many parents who wish they didn’t have kids (I have never met one).  A guy I knew a while ago had two surprise children, including one before he was married.  He was the kind of guy who always seemed like parenthood was maybe too much work for him and he wished it hadn’t happened.  Then one day he was talking about chasing his daughter through the halls of Microsoft and how she was giggling and he “lives for that laugh.”  If a guy like that can be frustrated with the trials of parenthood but still 100% glad he had kids, then I know it will all work out. 

I realized biology had fully set in when I was watching Meghan and Richard’s kid at Rock Bottom the other week and he was having fun blowing snot out of his nose.  Usually I look at that kind of gross or hyper activity and think, “god, I am so not ready for that.”  This time, I looked at him and thought, “that is gross, but I still really want one.”

Impending Doom

I am going to start weaning myself of Celebrex in 3 weeks.  It is hard to not feel a sense of impending doom hanging over each day.  I won’t probably feel really bad for 2 weeks after I start tapering, but starting in 3 weeks I will have to drastically cut back on my activity.  One wrong step or wrong move can tweak my joints or tendons enough to either flare an existing tendonitis (wrists, pinkies, knees, jaw, elbow, toe) or start a new one (which would then be permanently easy to re-flare).  I find myself pretty optimistic about pregnancy and hoping for remission (although not planning for it), but it is hard to not dread the period where I am off Celebrex and hoping to conceive. 

I am lucky enough to have a great job and if I need to cut back on hours, I can do it as much as I need.  Also, I shouldn’t need to do much around the house so I can focus on being smart and taking care of myself.  However, stupid things happen (like today I ran into my dresser drawer and will probably be feeling it for a few days), so in addition to not pushing myself, I am going to have to have my guard up all the time.  Also it is frustrating when my hands and legs are flared, and my only option is to sit around a watch tv (or read my kindle, yay to having a kindle which will be easier to hold/prop up). 

However, I am working hard at non thinking about the future bad times.  I call it “pre-grieving” and it is a total waste of energy.  There is a certain amount of sense in pre-planning (doing whatever organizing I want now, prepping my work folks, etc.), but why sit around and imagine what it is like to be in pain?  I’ll have plenty of time to enjoy it when it happens ;).  I also need to just remind myself that the whole thing is temporary.  How many parents do you know, wouldn’t put up months of pain in order to have a child?  The prize makes the whole thing worth it.  I know I would regret it forever if I let fear or wimpiness keep us from having a kid. 

Nesting and Asking for Help

I’ve heard about this nesting concept, but I didn’t realize it would start at the same time as the baby crazy feelings.  I don’t know if it is the fear of how I feel once pregnancy starts, but I have this irrational desire to organize and clean NOW!!!  Of course, it is made worse by the fact that if there is going to be a baby room in the future, some serious organization needs to happen to at least one of our two cluttered extra bedrooms.  It is strange, I’ll be sitting around relaxing with Charles, but almost itching to get up and be productive.  Unfortunately with my arthritis a little flared right now, I can’t heed that desire.  I often find myself wandering into the room to organize and have to stop myself and walk back out and sit down.  Yesterday I was able to spend about 30 minutes doing a little cleaning but I had to be really careful and I was tired for the rest of the day (but not hurt). 

Two of my girlfriends have offered to come help me get some organization done and I am super excited to see some progress.  However, Charles’ reaction to my desire to get some help is interesting but not unexpected.  I think he would rather we do it ourselves and is 1) unsettled by having people go through our things and 2) feels like a failure for not doing it himself.  I have similar reservations, but I think it is good practice for us.  For me, I need to know that there is an option other than me or Charles doing everything. 

I am sure I can’t even imagine how much work a baby will be yet, but I know that it will be too much for Charles to do on his own (or with minimal help from me).  In the past, when I have been really sick and the household responsibilities have fallen solely on Charles, it has been tricky.  When Charles has been too overwhelmed or busy to complete everything, I have felt like I had to do the task, no matter what the price to my body.  Fortunately for us, as a couple without kids, most tasks can wait a day or two, so this has come up rarely.  This situation is stressful for both of us too because Charles feels guilty for not helping.  However, I don’t blame him because realistically there is only so much a hard-working guy can do when he gets home from a long day at work before it is both unfair and unreasonable. 

However, with an infant, cleaning, laundry, bottles, etc. will all need to happen on a regular basis regardless of how tired Charles and I are.  Therefore, I think it will be so important for us to ask and, especially, hire help.  We are both on board with hiring a nanny (in thought anyway), but I still think it feels like failure in both of our minds and a little practice asking for a receiving help is a good thing for both of us.  Of course, we have amazing and loving family and friends who will help too.  I think, for me, having hired help for most of the chores and not so fun baby tasks will make me feel like less of a failure then depending solely on charity.  Of course, family and friends will be welcome to help with the fun baby holding part of things! 

Although this sounds good on paper, I don’t doubt that my maternal instincts will be a million times louder in my head than the nesting instincts.  When my baby cries, I will want to get him/her and it will take some practice to let someone else help (not to say that person can’t just bring the baby to me).  This goes into another post about being the mom I want to be (so stay tuned). 

The Big Three Questions About Pregnancy

Some of you may wonder how my arthritis will affect our potential offspring.  We did too!  For us, there were three main issues we wanted to iron out before we decided to have kids.

1.       Are our children genetically more likely to have any of my issues?

No!  Thank goodness.  There is a genetic component to arthritis and then it is triggered by some environmental event (usually a virus).  However, quite a few people have the gene but never get arthritis (like most of my family except one cousin).  So many people have the gene that my kids chances are the same as any random person, because they could also have the gene.  Also, my kids might not get the gene for sure.  So, we feel confident that it will be fine.  My kids will likely get the Inverso nose, but arthritis is unlikely. 

2.       Is a pregnancy with my health issues/medications going to result in a baby with any problems?

Not if we do it right!  I am considered “high risk.”  The main reason is because some of my tests (occasionally positive ANA and SSA) mean I could be more at risk for pre eclampsia.  Most women have about an 8% chance of pre eclampsia.  Mine is more like 30-40%.  By taking aspirin during my pregnancy I am able to reduce this risk down to the 8% range.  For the record, not all cases of pre eclamspia are run to the hospital events.  Most just require monitoring or some blood pressure medication (most are safe during pregnancy).  However a few are really serious and require the baby to be born immediately (the only real cure to pre eclampsia) which can lead to a baby being born before it is viable.  However, staying pregnant could mean death for me.  My doctor has said in no uncertain terms that I am her patient and that if I got bad pre eclamspia, then we would need to deliver if we can’t control it.  As terrifying as that inevitability is, we agree. 

The other big risk is that my health would get so bad that I might have a baby with growth problems.  This is just something we watch for and take action if necessary.  If I am feeling really terrible or my blood tests show super high inflammation, then I will start prednisone.  It is safe for the baby and will keep my immune system in check so my body can focus on growing a baby!

3.       Is pregnancy going to have a long-term negative effect on my health?

No.  Well, a qualified no.  Pregnancy has risks and those are just as present for me.  However, in terms of my arthritis, there shouldn’t be.  Arthritis can permanently damage my joints, but since I will be staying on my main disease management drug and I can take prednisone if needed, I won’t get any damage no matter how bad the pregnancy is.  I will likely get a bad flare sometime after pregnancy, and pregnancy itself may be hard (it may be great!), but then I will return to the same state as now.

So, although pregnancy might mean temporary ickiness for me (potentially more than your average woman), there is nothing different for the baby or me in the long term.  That doesn’t make it any less scary for Charles and me for the time being.  However, we both really want to have biological children if we can, which makes this worth a try!

The Start of Changes

Although Charles and I decided about 2 months ago to consider the process, and about 1 month ago to really engage in it, I am just now feeling the effects of it.  I have stopped my previous arthritis medication and switched to an oldie-but-goody that is better for pregnancy.  However, while I wait for the new one to kick in, I am feeling a little worse.  It is hard not to dwell on each day and try to prepare myself for 12 more months of this.  However, that is silly.  Yes, I want to be prepared for the worst and not be disappointed in myself or circumstances if it is bad, but if I am in pain and I am thinking, great one of 365 more, it is hard to want to continue the process with a good attitude.

Since I was 19 and first got arthritis in my hips, I wouldn’t say I have been average, at least physically.  I have gotten pretty used to it and not found that it got in the way much.  As I approach motherhood, I am struck by how different yet similar I feel to other wanna-be mothers.  Is my potential pregnancy a little more complicated?  Sure!  However, my fears are the same as all moms.  How will I feel while I am pregnant?  Will I be sick, will there be complications?  Will my baby be healthy?  Will I have any long term effects from pregnancy?  Regardless of whether I had arthritis, I would be asking these questions.  The more I think about the differences that might pregnancy might have, the more nervous I get.  I find comfort in knowing that this whole process is an unknown for everyone.  I may have more things that could go wrong, but I may have nothing go wrong! 

For now, I am trying to take one day at a time and not plan for the worst.  I feel very good about our plan for my medications and I really like our doctor, which gives me great comfort.  Not to mention that I have a fantastic partner who is willing to step in and help whenever I need, and tons of friends and family who would do almost anything for me!  I think whatever price I pay in the short term to bring this baby into the world will be well worth it! 

The Plan

Some of you have probably heard this, but so that everyone is aware, here is the plan. 

July – stopped birth control

August – started charting cycles (thanks Tara for the great book “Taking Charge of Your Fertility”).  This will help us be able to (hopefully) conceive soon after we start trying.  Stopped Simponi (current main arthritis drug) and went back to Enbrel (one I took before).  Enbrel has been on the market for 2 decades and many women have had babies with it.  It isn’t the perfect treatment for me, but is about equal to where I have been on Simponi but with much more baby data behind it.  Started prenatal vitamins.

September – Stop methotrexate (icky chemo baby-killing drug), stop hydrochlorothiozide.  Starting aspirin to reduce risk of pre eclampsia. 

October – Stop remaining drugs:  rozarem, Celebrex (which I will taper off during the month), tramadol.  The Celebrex taper will be the hardest since it keeps my tendons working.  This will be the start of a harder period for me.

November – At the beginning of the cycle, be done with all drugs other than Protonix (acid reflux), Inderol (migraines), and Enbrel (arthritis).  Try to conceive baby when fertile. 

Pregnancy – Hopefully it will happen right away (yes, I am always this optimistic about everything!)  We can’t predict how my arthritis will respond to pregnancy.  I may get remission (complete break from all symptoms).  In that case, we are having 12 kids (just kidding).  It may stay about the same, and it may be much worse.  I am also at higher risk for pre eclampsia (dangerously high blood pressure), so I will have to watch for that.  If my arthritis is pretty bad, I will likely start taking prednisone.  This is completely safe for pregnancy and will keep me healthy-ish.  If my arthritis is completely uncontrolled, then the baby could not grow well (and it would suck), so we have a good back up plan that is safe for both of us.  We have a great high-risk OB and will be meeting with her regularly (yes, very regularly for high risk pregnancies). 

My Blog!

I never considered myself the baby-crazy type, but turning 30 really made me want kids, badly!  I think Charles and I would be make great parents and I look forward to contributing something tangible to the world in the form of our little offspring.  As we start this journey, I am going to keep this blog both for my own sanity and to share with you all what is going on.  My sister-in-law had a great blog about her pregnancy (and now kid!) and I want to be as open because it has been really fun to read.  Although most people aren’t so open about the conceiving process, my situation is unique enough and complicated enough that I think now is a good place to start.