Almost 20 weeks!

10997771_10153566954324522_6267979507934363414_nHey There, My Big Boy!

Hard to believe, but Wednesday of this coming week will mark 20 weeks that Henry has been in the world, and he’s already wearing clothes for 6 month olds. My little peanut is now more than 16 pounds and 27 inches long! ¬†I’m thinking it might be time to bust out the jumparoo for him. ūüôā

This kid is all kinds of awesome. ¬†Sure, I spend all day, every day with him, so I’m biased — but I used to babysit a lot. ¬†This little guy only cries when there’s something wrong. He’s inquisitive and gentle (except when he’s pulling my hair), and he loves music and books. He snuggles like a champ, he’s decided that diaper changes are actually an opportunity for
jiu jitsu training, and he has the best laugh on the face of the planet.

Right now, his daddy is out of town, doing some training for work, and my mom is coming in town to be with us.

It Takes A Village.

I have to say, I had no idea, when I got pregnant, what I was in for or how much help I was going to need. ¬†I thought, based on those years of babysitting, that I had this mommy gig¬†handled no problem. Man, was I wrong! I hadn’t even thought about what life would be like when I got sick.¬†And I’ve been sick for 3 weeks now with acute sinusitis.

The first nurse practitioner who diagnosed me only gave me 5 days of antibiotics… so I got a little better, and then relapsed hard. ¬†The second nurse practitioner (who I saw about a week later) was completely worthless and referred me to my primary care physician. When I arrived for my¬†appointment with her, to my surprise (and dismay), I was examined by a STUDENT nurse practitioner! ¬†Then the practice’s regular nurse finished up the visit, decided I still have sinusitis and put me on a 10 day regimen of antibiotics.

p17llh52kd1euorcm9ghmg6h16_L_655x435I’m not exaggerating when I say that only 4 hours after the first dose of antibiotic, I started feeling better. ¬†This morning is actually the first time I’ve had energy without drinking a Monster Rehab in almost a month. (This stuff is stronger than 5 Hr Energy, believe it or not!)

I’m not sure why it’s been so difficult to see an actual doctor this month, but when I tried to establish care in my new hometown, I was informed that the doctor was booked up until October. ¬† Yeah, like I’m gonna wait 3 weeks for something like this… I can only guess that this virus/infection has hit an awful lot of people.

Anyway — as many of you know, fevers cause pseudo exacerbations of MS. ¬†This means that over the last 3 weeks, accompanying the low-grade fever that came with this infection, I’ve had a lot more seizure activity than I normally would. ¬†There was one day where I kept seizing over and over again. I became very worried for my son’s safety and my own, and called Adam, who promptly called Laura (my sister-in-law). She came over and watched us for a couple of hours.

I was, and am, so profoundly grateful that we have family members who are willing to help us in times like that. I’m also glad that we now live only 20 minutes away from them. When we were living in Chicago proper, it took between 45 and 90 minutes just to see them, depending on traffic.¬†So, I don’t remotely take their help for granted ¬†— or that of my mom’s. She’s actually¬†driving 8 hours from Pennsylvania right now to spend the week with us while Adam is handling his job requirements.

12002085_10153575527509522_4895338687839097525_nI’m especially grateful that Mom will be staying with us since I’m a little worried about Henry. ¬†Adam¬†took him to the doctor earlier this week because he’s got similar symptoms to mine. (No one in the Majka family has escaped this cold — not Busia, not Dottie, not even Uncle Jeremy.) ¬†Anyway, Henry’s temperature has been good, but today, he’s been tugging at his left ear. ¬†My right ear was clogged for 2 weeks straight. ¬†It was miserable, and only got better 2 days ago. ¬†Unfortunately, Hugabug’s too young for decongestant, and the doctor doesn’t want to give him antibiotics unless he ends up with a fever, which is understandable.

So, right now, Little Dude is going back and forth between fussy and asleep. ¬†The only bright side I can think of is that I’m getting pretty skilled with the disgusting-in-concept, but incredibly effective NoseFrida snot sucker. Fortunately, his goop is not green like mine has been.

Homemaking

I’m also grateful that Mom is coming to town because, with all this illness, we’re still not fully unpacked. I’m really looking forward to having her assistance with organization, since this house is sorely lacking in innate storage space. ¬†I have a strong feeling we’re going to be buying some furniture.

I also am happy that it’s almost Monday, which is when the plumber will be here to fix our leaky kitchen sink (which he completely rebuilt less than 2 weeks ago, so really, WTF?) and the HVAC guy will be repairing our return duct (which is somehow not attached…) so we can run the furnace.

Temperatures here in the greater Chicagoland area dipped into the low 50s last night. When I woke up this morning, it was 62 degrees in this house, thanks to the combination of not having a working furnace and having windows with broken seals. At least now, it’s warmed up to 70 in here. ¬†We gotta get this shit fixed ASAP. We have to be ready for snow.

Other than that, not lots is going on with me. ¬†I want to make some friends in the area, and am sort of at a loss for how to do so. There doesn’t seem to be an active Orland Hills/Orland Park/Tinley Park mommy group on Facebook or Meetup.com like there is in Chicago proper. ¬†My inner entrepreneur says, “Just start the group, and they will come!” ¬†but the most of me says, “UGH. MAKE ME SOUP AND TAKE A NAP ALREADY.”

I think I should probably listen.

Maintaining a Happy Marriage with MS

I spend a lot of time online, engaged in MS support groups. ¬†Recently, there has been a theme in some of the groups that I find upsetting — and that theme is complaining about husbands/caregivers. ¬†The women who engage in this think that because it’s a support group, they can complain about their partner without any sort of judgement or negativity coming their way, and oftentimes, they’re correct. ¬†These are support groups after all, not group therapy sessions.

My most frequent contribution in discussions like these is to suggest couples counseling, but, on the other side of the screen, I’m almost always thanking God for my husband, Adam, and thinking about all the things we do to make our marriage work while enduring MS together.

Truth be told, Adam has taught me a lot about the meaning of unconditional love, teamwork, and intimacy.  I think one of the best ways I can repay him for that is to share some of his lessons with you.

How to Have a Happy Marriage With MS.

1.) Make MS the third wheel that it is.

notyourdiseaseI love Adam, and Adam loves me. But we both hate MS.

He’s seen what it does to me more than anyone else has. In fact, he was holding my hand when the doctor gave me the diagnosis. ¬†He has reminded me, innumerable times over the 8 years that I’ve had this disease, that I shouldn’t internalize or own this disease. MS is not a part of who Rachael is. I didn’t ask for it. I didn’t cause it. I don’t want it. He reminds me that if it were a head cold, I wouldn’t apologize for having to take¬†medicine or needing to rest. ¬†He doesn’t see it any differently.

So, when I tried, several times, to push him away while we were engaged so that he would leave me so that he wouldn’t have to deal with having MS, it was silly to him. Neither of us want MS in our lives, but neither of us can imagine life without each other.

Who you are is how you react to the challenges that MS throws in your way. You are not MS. And to have a happy marriage, your partner needs to know that.  They also have to help you fight it.

2.) The Golden Rule Is ALWAYS In Effect.

GoldenRule-2Did your partner leave dishes in the sink, or even all around the kitchen? Take a moment and think before you gripe at him or her about it. Would you want to be chided for not doing chores? Of course not! So just do what needs to be done, and allow them some grace.

The same thing goes for allowing grace within your relationship for hard times caused by¬†chronic illness. ¬†Would you want someone to put you down for not being able to work? ¬†Of course not! ¬†You’d already be wrestling with shame yourself. ¬†So, don’t make your disabled¬†partner feel worse¬†about themselves.

This doesn’t mean, however, that you should be a doormat or be doing all the work all the time — which brings us to #3.

3.) You Are A Team. Act Like It.

nowinnerWhen you got married, you started a family. ¬†It’s you and your partner versus the rest of the world. Even the law acknowledges that spouses cannot be forced to testify against one another because it would be like testifying against themselves. In community property states, they have codified the idea that “what’s mine is yours” in marriage.

So don’t ruin your intimacy and happiness by playing tit-for-tat games or being¬†consciously¬†passive aggressive. ¬†You don’t help yourself or your partner when you start comparing things between the two of you or expecting your partner to read your mind. Ask for the things you want, and give of yourself to them generously.

4.) Engage In Good Self-Care — Both Of You.

selfcareThere have been times when Adam has told me that the best thing I can do to make him happy is to make sure that I am safe and am taking good care of myself, because it means he doesn’t have to worry about me when he’s at work.

As someone who deals with MS and seizure disorder, it’s my job — my #1 job — to minimize the effects this illness has on me and my family. ¬†It’s Adam’s job to support me in doing so.

This means that I make and keep regular appointments with my various doctors (and he helps me get to those appointments and to remember what the doctors have said), set alarms to remind me to take my pills on time (and he follows up to see if I have taken them), do my best to eat healthfully (and he joins me in the effort), get regular exercise, meditate daily, and talk with a therapist when I need to.

Adam takes good care of himself too, maintaining his health, acknowledging when he needs to rest, and calling friends and family when we need extra help.

When you take the time to take good care of yourself, you make things easier for your partner, whether you’re the one with MS or the one who is a caregiver.

5.) Practice Gratitude.

spousegratitudeOne of the things that I¬†am acutely aware of is how much Adam does for me. ¬†This is not because he has said to me, “Do you realize I’ve done XYZ?” but because life runs so smoothly.

I know all the things I want to do to help out around the house and can’t always get done because of fatigue or seizures, and I acknowledge how much work goes in to all the things he does to keep our family comfortable. ¬†He works full time. Most nights, he cooks dinner. He runs all the chores that require a car. And I honestly can’t remember the last time I took out the garbage.

Every night, just before we fall asleep, right when we’re cuddling, I make sure to thank him for at least one thing that I can think of that he did that made my day better. ¬†Sometimes, it’s as simple as, “Thank you for making a delicious meal.” and other nights, it’s more like, “Thank you for working so hard, for so many years, that we were able to save up and buy a house.”

Our marriage is happy, not just because I recognize all of his hard work, but because his response to me is almost never just, “You’re welcome.” Most nights, he’ll¬†thank me for something specific as well or to let me know that I had a hand in his success.

Does he need the praise? Probably not.  But he deserves it, and taking the time to show appreciation to one another goes a long way during times when things are difficult.

6.) Foster Intimacy

A big complaint that I hear a lot about in support communities is the lack of sex that happens when you have MS. ¬†Let’s be real here — there’s nothing sexy about fatigue or numbness or pain or cognitive fog. ¬†So we have to work harder to keep any kind of passion in our relationships.

You can’t fake the funk when it comes to sexytimes. If you do, you get caught up in the bad sex loop. ¬†You force yourself to have coitus. You don’t enjoy it because you’re too busy thinking about how your body feels or how uncomfortable you are with the situation. Then the next time you’re ready to get busy, you worry it’ll be bad this time because it was bad last time, because you couldn’t stop thinking about all of the things. The bad sex loop is treacherous. And it doesn’t just hit folks with chronic illness. ¬†Even Coupling¬†acknowledged The Melty Man.

So, take the pressure off, and quit focusing on your illness. ¬†Even perfectly healthy couples go through dry spells. Heck, maybe you just had a baby and are healing from a c-section. That’s 6 weeks of mandatory celibacy!

There are all kinds of things you can do – from backrubs to breathplay, phone sex to making bucket lists together – the options for improving intimacy are damn near endless, and there are a ton of articles with suggestions to help you out.

7.) Refuse To Give Up

galaxyquestLastly, and perhaps most important is honoring the commitment you made to one another.

People grow and change with or without illness as a complicating factor in a relationship.  It takes two people working together to make a happy marriage. It only takes one partner working against it for it to fail. You have to both want it. You have to have both meant it when you said that you would be together for richer or poorer, through sickness and health.

Sometimes, this means that you need a marriage and family therapist to help guide you back to the relationship that you want and deserve. ¬†There’s no shame in that.

Othertimes, you just need to step back, take stock of the situation, and correct from there. I personally am a fan of the Gottman method, and think if you’re looking to improve your relationship, it’s a great place to start.

—-

To my darling, wonderful, patient, hilarious, warm, helpful husband: thank you for being the inspiration for this post. I love you more than human thought can comprehend, and I can’t wait to see you when you get home from work tonight.

And to my sweet 4 month-old baby boy, thank you for napping long enough for me to write this. ‚̧