Join the conversation, please.

In  How to Be a Good Mommy When You're Sick: A Guide to Motherhood with Chronic Illness, I wrote:

My mission is to find every possible tip and trick to make chronic illness and motherhood as joyful as healthy mothers who do not have to juggle medical issues as well as motherhood and careers or simply motherhood, a full time job in itself.

I have continually written about myself but know there are other moms and dads out there that have questions and concerns about specific problems or issues. I would love the opportunity to research these specific problems or issues and help connect you to the answers you need. Solutions are out there and if I don't have an answer myself, I will do the research and bring you some solutions.

Also, I know there are both moms and dads out there that have amazing tips and tricks to making parenting with chronic illness a bit easier so we can focus on the joy of parenting and I want to hear about these too.

I am asking you to join in the conversation and communicate with me however you feel most comfortable. Options for contacting or following me:

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Contact form: http://www.chronicillnessandmotherhood.com/
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I look forward to connecting as I feel there is strength and support in numbers!

Emily

Saying No to “Woe is Me”

I recently went for one of my infusions and started thinking about how thankful I was that I remembered my earbuds. This routine of keeping earbuds with me as a back-up plan for all appointments – especially long appointments – has had a very positive impact on my psyche .

Getting sucked into the “woe is me” trap is really easy when you spend much time at the doctor's office. It seems that everywhere I go people are complaining, but the worst part for me is listening to people complain about my doctor. 

At my last infusion, while in the waiting room, before the earbuds went on, I found myself so frustrated that I announced loudly that I really love my rheumatologist and think she is doing a fantastic job. It is true that she is not meeting patients for social hour, but I would much rather have a highly skilled doctor that does the research and makes informed decisions than one who is worried about minute details of my social life.

Once I made it back to the infusion room, the complaining changed to “woe is me!” and I did everything to ignore it while being prepped for the infusion, but I honestly could not wait to settle down with my earbuds and watch a movie on Netflix for the next few hours. One man was working himself up into a frenzy after the IV was started but before any medication had been added – he told someone with him that he was already starting to get a headache because he knows he gets “so worked up about these things”. Then another man was having insurance problems. This I can empathize with but for hours? Really? Enough focusing on the negative in my healing space, thank you!

While at other appointments over the years, my experience is that people tend to compare problems and revel in the negative at these types of appointments. And, don’t even get me started about nephrology! My current nephrologist is awesome about managing time, but the nephrologist in Georgia was one of eight in a group and really slow. So tons of people had tons of time to sit around and play this endless “woe is me” competition.

Those who don’t talk at infusions usually do a lot of grunting and dramatic gestures with iPads and such. This strange negativity can easily suck anyone who spends a lot of time at the doctor's office into it because it's part of the culture of being chronically ill. It's a culture that must be rebelled against actively.

Trying to focus on getting as healthy as possible is important and staying positive is equally important. I do not have it together every day but do think much of this behavior negatively impacts people around us and I do not want to be the source of anything negative.

What we say and think both out loud and to ourselves reinforces how we feel and I think, how we react both physically and mentally to situations and illness. I encourage you to work at being positive and when possible, put on your earbuds and ignore those who are not. Saying no to the “woe is me” mentality may make a huge difference in your life. I know it has made a huge difference in mine!

Emily

Of Roller Coasters, Kites, and Keeping the Main Thing the Main Thing

[My son and his "girlfriend" (AH!) talk while their kite, far overhead, tugs at the edges of their perception.]

Does chronic illness consume too much of your life? At times, it has in mine. I never consciously decided to let it take up more and more of my time and space, but it has happened. I've been on a monster roller coaster ride with RA that's lasted years. In the beginning, one biologic had me on “cruise control” for years, clicking me slowly up the hill, higher and higher, as I enjoyed the view. Then came my very carefully planned pregnancy, and the ride began in earnest with a deathly plunge at bullet speed. If you have read this blog before – or my book, you know instead of going into full remission like many women with RA, I got really sick. RA essentially shut down my kidneys, and I have been fighting ever since. Almost 4 ½ years later, I am finally off the roller coast from Hell, and happy to be on much more manageable merry-go-round of relatively benign daily aches and pains. I think recent good fortune is the result of time and finding the right healthcare professionals to join my team. Working together with my doctors and loved ones, I have been able to become far more functional and rejoin society (for a lack of better description) as a mom, wife, and professional. Prednisone face be gone!

Undoubtedly, some of the things I have to do to take care of myself take time – for example, my infusions, but other things I do are pretty normal for people who just want to be healthy. Watching what I eat, yoga, trying to stay active, therapeutic massage, stress management, etc. I think disconnecting these things to being sick is really important because it shifts the focus to being healthy. Healthy is the goal, the main thing. And as Stephen Covey, author of Seven Habits of Highly Effective People, says, "The main thing is to keep the main thing the main thing."  The important and sometimes really hard part for me is making myself stick with these healthy routines so that I do not let RA sneak in and start taking more and more space in my life. When you are busy with a child (or children), it is really easy to put your personal needs aside because, instinctively and emotionally, children come first. But a question arises if you try to keep the main thing the main thing: if you are not as healthy as possible, are you able to give the children your best? I think the answer(s) to this question form a good case for quality verses quantity.

If you find yourself in a place where you feel “stuck”, please know that I have been there and sometime go there if I am not diligent and persistent in working to be as healthy as possible. Having not only support at home but a health-driven medical team has made a tremendous difference in my life. I encourage you to remember yourself and know that when you are at your personal best, it is the best thing for your child or children. Being as healthy as possible must be the main thing. 

Although you would never know it from the attention given to the kite, my son and his girlfriend really wanted to fly a kite the other day. It turned that while the kite caught the wind and had a wild ride, the kids kept the main thing the main thing (each other). This is also a good reminder for me. That kite is like my struggles with RA, and I can focus on it, or I can focus on being healthy. The kite may be tied around my wrist, but it's not the main thing. 

Emily

A Normal Day

Today was the most "normal" feeling day I have had in such a long time. So long that I can't remember. I am always working on improving my endurance, eating for health, taking my medicine while fighting to stay off prednisone, etc. and today it seemed that everything was working. Will's friend came over at 8:30 and we played until 2:00  - outside, inside baking, painting, just playing. Then, Will and I hung out until Rob came home and I grilled shrimp. Not once today did I have to not do something because some piece of me hurt or was swollen or too tired. Yay!

On a funny note - in the background today:

Ahhh - our air conditioner died - I mean REALLY. So we had a repair man here installing a new motor and other small parts to find out that our compressor needed replaced - totally dead and that has to be ordered. I am told to hope for Monday. Of course, we are planning on being out of town Monday but since we live in a small town and a crew has to come in from out of town, I am told to just figure it out.

Fine - done...thank you ADT for the ability to arm/disarm and unlock/lock our house with an iPad.

Next came the rain....oh the rain. Now I love rain but when I don't know if I am standing on the porch next to my back door or a river my relationship with rain starts to get a little shaky. Also, this is so exciting now Will does not want to get ready for bed.

Then the repair man calls - Does tomorrow work? As if he has no clue about the weather situation but I don't mention it because I want that darn compressor replaced so I have air conditioning and this is a far better option than waiting until Monday - huge hassle we are not going to be here Monday. I always expect the best outcome and am expecting there to be no problems tomorrow.

Now it is still raining but the water has become peaceful and our lake is slowly receding away from the house - we are back on good terms. All is well, and I feel great!

Yes, we are expected to get more rain for the next two days but if the pattern holds, it won't start raining until 4 or 5 so here I am, very hopeful and expectant that I will have air conditioning tomorrow and my relationship with rain will remain strong as ever - I do love the summer rain!

Emily

Kitchen Redo Part 1

I have a reputation for biting off more than I can chew. I really can’t help myself – if I decide that I want to do something, I do it! This is the case with our kitchen, and it all started with the floors. If pulling one plank of the fake wood floor was easy – the rest would be a breeze…right? Wrong! The floors turned into a tremendous job that only led to other issues, like the kitchen cabinets and then the handles and then the wall color…. Fortunately, we are nearing the end of my experiment but it has taken a while. This is a both a confession and update. Once we finish I will post pictures of the final productJ

Step 1: If you have RA or another condition that limits your physical ability on occasion, rethink tearing apart your kitchen. Luckily, our contractors were available in my situation. In other words, you really should have a back-up plan to any do-it-yourself plan. If not, you may get stuck with a tremendous mess!

Step 2: Remember, everything always takes longer and more effort than on HGTV – I can’t stress this enough, but with determination anything can be accomplished.

With that, here is what I have done so far:

Original cabinets and partial floor after my demo started:

What a mess!

I finally finished the cabinets - hardware still needed:

Stage 1 with the flooring professionals:

Concrete floor finished - only touch-ups needed - and clearly a new wall color:)

As far as I have gotten - going grey with the walls, hardware installed:

Tomorrow our floors will get their final touch-ups and then the wall and trim paint will be finished. Lastly, we are having built-in seating installed by an actual carpenter (not me!) in the next few weeks.

To be continued…..

***Note: I will not do this again. I believe strongly in expertise. I have touched the stove – it is hot, and I am no contractor!

Happy Memorial Day!

Emily

It’s going to be a circus!

Summer is here - I hope you are ready.  I’m not going to lie, I really appreciate Will’s school and he loves it. It is a healthy break each day from each other. He is too young for camps to be worthwhile. Last summer we tried British Soccer Camp - an hour and a half each day for a week and it was a complete flop. Will didn't even play that special sort of toddler soccer often referred to as “herd ball” because the kids all run in a pack after the ball. Rather, he found ant hill and counted black ants. So rethinking this summer, we will continue with Little Dragons martial arts - twice a week for 30 minutes. Although he loves going and has decided he will be a black belt, this does not begin to structure our summer days/weeks.

Today was the first day of the last week of school - what to do? This week’s theme at school is the circus and it feels so appropriate – oh a circus the summer will be! With my low tolerance for providing constant entertainment, I have to be prepared. Surely I am not alone in this, but I do know some moms who can’t wait for the 24/7 run around for 3 months. Me, not so much. I keep dreaming for the summer beach house – do nothing then drink red wine and eat a baguette days of my life J Will is invited, of course! Although he may have to drink sparking apple juice!

Preparation: I have spent the last month setting up activity stations both inside and outside the house. Inside we have a play room with stations set up like a preschool room. Letters, blocks, train table, drawing table (he loves to draw), and yes, Netflix with strict limits. Currently the only shows he wants to watch are documentaries about space, so I think we are safe. We have puzzles, race cars, and in my opinion more than any single kid needs. Of course, since I am the one who cleans up his “office” my perspective may be skewed. Nonetheless, inside is important because our weather is extreme. Our “regular” summer weather is hot – 100 degrees hot. They did not name the Hotter than Hell bike race here without cause.

Outside we built a wooden swing set/fort combo in the backyard. Also, my parents brought us a huge tractor tire that we had filled with sand. Thanks for your help Mom and Dad! And finally, we have a huge trampoline with the safety net! My circus is set to begin!

I even have a plan for playdates! Two of Will’s friends from school have very awesome parents and we are all going to trade kids throughout the week so we all get days off – genius!! So, our house will be a circus, and who knows how the others are preparing but with kids added to the mix – we are sure to do some acrobatics.

Learning from Will

We all know to watch what we say around our kids – no “bad” words or anything that adults obviously don’t want their kids repeating in public. But, what about the things we say that are not “bad” but just part of life. Sometimes my son makes me really aware of what I say or do on a regular basis. Yesterday Will announced that his back was hurting really bad today, so he needed to sit down. Then he said, “Well, Mommy, your back doesn't hurt today?” The huge question mark was in his tone. It really made me think – kids are so aware. I did not realize that I mention my back so much, or maybe I don’t say it so often, but I am sure my discomfort shows. He is concerned, and I get that, but I hate that our four year-old is worried about my back.  I wonder, how honest should I be with Will? My first instinct is to protect him from dealing with health problems; however, I don’t think it is wise to pretend that nothing is wrong because when the time comes, as it will, that I can’t act like nothing is wrong, it will be a shock: Oh, Mommy is sick. Sometimes, really sick. Still, I don’t want him to worry all the time about my “inside booboo”.  

So I started thinking about what other telling things Will says. This is practical because he is in the phase of processing his day out loud at bedtime. If we really want to know what is going on with him, the secret is to go through our regular bedtime routine: bath, brush teeth, story, goodnight, and then step outside his door and listen. Heck, sometimes he talks or sings so loud it echoes throughout the house, so no sneaking necessary.

During the Day Quotes:

“I really need you to get up off that hard floor, it will hurt your back.” – When I sit on the bathroom floor while he takes a bath.

“Well, I am going to eat so I can grow – I’m biggering and biggering and biggering” – this one comes with his hands thrown up in the air as he demonstrates his growth. Bless his heart – he is the smallest kid in his class and is really focused on getting taller. Also, thanks to Dr. Seuss, he does think “biggering” is a word J

“No, I told you…” – Yes, I do say this a lot and am working on rephrasing my directions. Clearly, he should not be saying this to me though. We are raising a very opinionated child and have had to work really hard on discipline – which is admittedly exhausting.

Bedtime:

During his bedtime self-talks we typically hear about what he did with his friends at school or sometimes he makes up wild stories about volcanoes and rescuing his friend, Piper. I think this comes directly from nightly story time with Dad. My husband is a creative writer and fantastic storyteller. Will provides the characters (typically Thomas, Percy, some other typical preschool characters) and a bit of a plot then amazingly enough, Rob cranks out some fantastic adventure. Will is clearly practicing on his own.

The other option, which seems to be the loudest of them all, is his newly found singing voice. He goes to choir at school but never really made a go of it until now. Last night he was literally scream-singing, “Go, tell it over the mountain…” for about five minutes and then switched to the classic “ABCDEFG….”, next came “You are my sunshine…”, and then off to sleep. Honestly, it is sweet.

So, all of this is to say, kids are little parrots – they not only repeat what they learn but also pick up on when is not directly taught or said to them. With this, I think finding a middle ground so there is not some mystery about mom not feeling well some days or a daily code-red is best. As Will gets older, he will understand more, but I never want him to feel scared about me being sick. I love him too much for that. I also love him too much to flat-out lie, so because I am a teacher, I will use what I do know – the gradual building of knowledge; the scaffolding of understanding. The older he gets, the more I will tell him. For now, we will stick to my back hurts sometimes but I am trying to get better – and I am.