Daniel turned 32 on the second night of Chanukkah. He and Jen got married in beautiful Tamarindo, Costa Rica on the 4th night. It was great to spend almost a week in a tropical paradise at a swanky resort with my family.
I missed Adam and Henry terribly, but absence truly did make the heart grow fonder. I came back to a husband who appreciates my work at home even more than he used to, and I haven’t been nearly as grouchy about Henry’s shenanigans since I got home. (Truthfully, though, I’m still not a fan of diaper rodeo.)
I actually missed the kid so much I was looking at baby food at the market.
Nick (my brother-in-law) & I turned 35 yesterday, and we celebrated on Saturday by having free birthday dinner entrees and desserts at Houlihan’s and checking out the closest hole-in-the-wall karaoke bar near my home with Adam & Lizzie (Nick’s girlfriend). I got a free apple pie shot from the bartender and had the chance to sing “Biscuits” to a crowd that appreciated it. Couldn’t have asked for a better time.
I’m not sure what it is about turning 35 that made me ever so slightly melancholy. Honestly, I’m completely stoked that I’m still around. Every year that I make it around the sun again is a victory.
I think that there’s just some sort of arbitrary checklist in my mind that activates when I have a birthday… like some sort of silly, shitty, self-imposed performance review — as though there are metrics to hit. I’ve decided that, while I’m disappointed that I can’t always get everything done, I’ve handled my promotion to “mommy” with aplomb, and I am deserving of a bonus.
For my Decemberween gift (aka birthday/chanukkah/christmas all rolled into one), Adam has said that I can do whatever I want to do in order to get back into shape. He says he wants me to look at myself and feel as beautiful as he thinks I am every time he looks at me. My favorite thing about my husband is that he always wants to support me in being the best version of myself possible. 🙂 I feel very lucky to have him in my life.
Truth be told, the last time I felt genuinely beautiful was before I was diagnosed with MS. I lost 75 pounds before I started law school and was working out every day. Fitness (and by extension, confidence) was one of the biggest things that seizure disorder took from me, and I’m looking forward to reclaiming it.
So, I’ve decided to take a 2 pronged approach and to both work with a personal trainer and go to BodyLogicMD to get my hormones checked out and balanced. I am convinced that I either have a thyroid issue or leptin resistance. Regardless of changes in diet and exercise over the last several years (and there was a whole year when I did weightlifting 3 times a week and was 80/20 paleo), I saw no change in weight, so I’ve decided to find out why and do something about it.
Apparently, that’s what a grown-up romantic present looks like… lots of trips to the doctor and the gym. *lol*
Thursday night, we head over to the in-laws to celebrate Christmas Eve. I’m looking forward to it to the point that I didn’t buy any wine — just a lot of good food and some energy drinks. Without them, I’d never be able to keep up with the kiddos.
All that, and I’ve even sent out holiday cards on time this year! I knew it could happen! 🙂
Hope that you and yours are enjoying the holiday season, whatever holiday you’re celebrating.
This guy right here is why I haven’t written much in a while. It’s not for lack of desire or lack of subject matter — just that he comes first, and babies need snuggles like fish need water.
Kiddo is 5 months old. 5 months! I can’t even believe it. Time is on some kind of super-speed cycle right now. Days are whizzing past me faster than I can catch em.
We’ve been in our new home for almost 2 months (though we still have a ton of boxes to unpack), and on October 3rd, Adam and I celebrated our 5th anniversary. Since it was our “wood” anniversary, I made a custom Jenga game for us to play. Adam has promised me a tree to plant in our front yard, and I’m looking forward to picking it out this weekend.
Henry’s growing really well. He’s sitting up, with some support. He gets chatty here and there, and is starting to make consonant sounds. He’s getting really good at grabbing things – whether it’s a toy or a burp cloth or my hair.
He’s chilling out in his crib right now, despite it being just after his afternoon nap because he was having fun with his rattle, wubbanub, and mobile. I can’t imagine why I’d move him when he’s this quiet and content. I know the “I’m hungry/bored/wet” cries are mere moments away, so I’m taking advantage of this quiet time while I can. It’s a happy respite from playing on the floor or watching Sesame Street, which the kid absolutely loves.
Also, before anyone feels the need to tell me: I’m well aware that Mr. Roger’s Neighborhood and Daniel Tiger are both on Netflix. I just like Sesame Street better, and I’ve been trying to keep our TV watching down to a couple of hours a day. I use our TV as a jukebox too, so there are times when I’m concerned about how much screen time the little guy’s getting. Then again, like Mindy said… “I was literally raised on TV, and I turned out perfect,” so there.
It’s A Beautiful Day In The Neighborhood.
I’m happy to report that it is a gorgeous day. Currently, there is not a cloud in sight from our front window, and we’ve had it open, enjoying the breeze all day so far. My plan is to change the little guy’s diaper, feed him a bottle, and then take him out for a walk in a few minutes. Maybe we’ll go to the store and get some things we need.
Speaking of walks — yesterday, we discovered that there’s a small lake less than a mile from our house (apparently named Lake Lorin) where you can fish for large mouth bass (catch & release). It’s really pretty over there, and I’m excited that Adam will be able to teach me and Henry how to fish so close to home.
But for now, Adam’s at work, and I’ve got a diaper to change. Hope you’re well! ❤
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.
I 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.
Did 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.
When 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.
There 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.
One 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
Lastly, 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. ❤
Hard to believe it but it’s only 2 days until I’m at week 36 in this pregnancy. I’ve had so many things going on – so many things I’ve wanted to blog about – that I haven’t given myself the opportunity to write about any of it. Today, I’m going to do my best to catch up on the things that I’ve been remiss in posting about.
Henry’s Baby Shower
Saturday before last, my wonderful sister-in-law, mother-in-law, aunt-in-law, and Mom threw us a baby shower. It was awesome!
Me and my girl, Patty. This woman rocks my world so hard! She handed me down at least half of my maternity wardrobe and has been only a text away for any mommy-type questions or bitching for months now.
There was fizzy sherbet punch with duckies in it, chocolate covered strawberries, fried chicken, a huge cake that was half red velvet and half vanilla, white chocolate covered pretzel rods, croissant sandwiches, and so much more in the way of delicious food.
The present-opening portion of the shower pretty much looked like this, on repeat for a long, long time. Notice my niece, running around so fast to help us that she’s a blur. Cutiegirl collected all the wrapping paper, bows, and envelopes so we wouldn’t have to clean afterward. She’s the best helper!
Adam and I set up our Dropcam (best baby monitor EVAR) and broadcast a live stream for folks who were interested in attending virtually, though, to be fair, it’s not tons of fun to watch people eating and then opening presents.
We were very pleased to spend time with those folks who were able to make it, and many folks who were not able to make it were in our thoughts.
No one from my family was able to come other than my mom, but their presence was definitely felt! My Aunt Barbara sent presents and made a “diaper cake” of disposable diapers that was adorable on the gift table. Aunt Caren sent a pop-up book of the Wizard of Oz (which was Grandpa’s favorite story) and is providing us with a rocking chair (once Adam and I find one that fits the nursery). Aunt Debbie sent loads of really thoughtful presents like pacifiers that came with their own sterilization boxes and some of the cutest baby shoes I’ve ever seen.
These are, undoubtedly, the cutest baby shoes imaginable. Thanks, Aunt Debbie & Uncle Phil!
Please forgive me for only posting a handful of pictures. Less than 48 hours after the shower, almost everyone who attended ended up sick with norovirus (2 day stomach flu), so Adam and I haven’t had the opportunity to sort through all the pictures that were taken with his camera. We’ve been very busy organizing all the presents, figuring out what else we need for the kiddo, buying that stuff, and trying to figure out where to put everything. The nursery is now about 70% ready!
I have to give my mom extra thanks for sending me the pictures she took with her cell phone, and getting them to me so quickly, as well as the list of who gave us what presents. To those awaiting thank you notes – I assure you, they are forthcoming. I bought stationery this weekend, and Adam’s picking up stamps today.
Newborn disposable diapers! Thanks, Aunt Barbara & Uncle Stuart!
Truth be told, I’ve been absolutely bowled over with the love and support of friends and family. There’s no question that I need to bring Henry to Memphis sometime this coming year because he has a whole tribe that he belongs to there too… and still another in Los Angeles.
There’s something bittersweet about having so many places that I’ve called home. I miss so many amazing people, but I’m really grateful that the internet keeps us close. And I know that I’m lucky that I have such a large family here in Chicago and so many friends here who feel like family.
It feels like this pregnancy has been relatively calm, and then just suddenly, right now at the end, everything is coming together all at once. Hey, at least it’s coming together.
Adam’s 36th birthday is this weekend to boot, and I’ve got to make a party happen for him or he’ll just let it pass like nothing’s happening. It’s his last birthday without a kid! If he doesn’t take the opportunity to get sauced with friends, I will feel like I failed him as a wife.
Reading a card from one of my oldest friends, Nina, who I was lucky enough to enjoy time with at the shower.
Speaking of parties — Adam and I (in all of our interfaith/irreligious non-duality) have planned to have a “Welcome to the World” party for Henry in lieu of a bris or baptism to welcome him to our family and the community, but aside from having the idea and thinking that the 23rd or 30th of May would be a reasonable date, no real work has gone into it. It’s hard to plan something like that, not knowing when he’s going to be born or who would be able to attend anyway! (Do we rent a party room at a hotel? Do we have it at a park? When do we send invitations? So many questions.) If you have any thoughts on this, I’m all ears.
Acid Reflux from HELL, Super Itchy Palms, and Other Shit Pregnant Women Don’t Like To Talk About.
I’ve come to the conclusion that if women openly discussed what pregnancy is really like, more women would choose to remain childless. I’m not gonna lie; if I had any idea what some of this physical stuff actually felt like, I’d have downright insisted on adoption. I can handle barfing. I can handle sore sides and an achy back. I can even handle gas and poop that smell so bad that I occasionally wonder if something is actually dead and fermenting inside of me. But a couple of the pregnancy symptoms I’ve been dealing with in the last week have driven me absolutely nuts.
For the last few weeks, my GERD has developed mutant superpowers. Many nights, I get 2-4 hours of sleep, tops, thanks to acid reflux. I’ve moved my 20 mg of omeprazole to the evening. I’ve been super careful not to eat anything fried, spicy, bubbly, acidic, made with citrus or tomato after 5 p.m. (a good 6 hours before bed). Doesn’t matter these days.
The routine has become omeprazole at 10 p.m. 1000 mg of Tums at 11:00 (bedtime). 2 tsp of Gaviscon at 12:30 or 1 a.m. 1000 mg of Tums between 3 and 4. Sometimes, I take Gaviscon again when Adam leaves for work between 5:30 and 6:30. Getting back to sleep is not easy. Most nights, I pretty much lay in bed just resting, hoping for sleep to come. And just in case you’re wondering about this medicine regimen, I’m not setting alarms. No, that would be silly. This is me waking up because there’s bile in my throat or vomit in my mouth. I wish I were exaggerating.
The weirdest thing, though, is that I’m perfectly fine most of the time during the day. As long as I’m vertical, there’s no problem. So, you’d think if I made enough of a pillow fort to keep me at a 45 degree angle, I’d be fine, right? Apparently not. I’ve actually been fantasizing about purchasing a recliner just so I can sleep in it.
The biggest problem with me losing sleep is that it leads to seizures… and I’ve had more than a handful of complex (read: time travel) seizures in the last week. Fortunately, I didn’t have any yesterday and I haven’t had any today.
What I have had today is itchy palms. I teased Adam this morning that we’ve got to be coming into a lot of money because of how badly my palms were itching. (It’s so bad it almost feels like burning and woke me up repeatedly.)
I immediately thought, “Great! A new MS symptom!” but it looks like it’s something called cholestasis that happens in 1% of pregnancies. (There I go, being that special case again!) This might mean that the doctor will want to induce or do an emergency c-section next week (at 37 weeks). And before anybody else responds telling me to use Benedryl or that it’s probably an allergic reaction, please allow me to inform you that there’s no way that it’s an allergic reaction because I haven’t eaten anything new or used any new skincare products and cholestasis does not respond to antihistimines. It’s a build up of bile acids.
Needless to say, I’m concerned about it. I mean, aside from the fact that I’m genuinely afraid for my son’s life, I also can’t stop scratching my hands, and now my ears, forearms, and inside of my upper arms are itchy too. And it’s not like a regular kind of itchy or anything that would respond to lotion or tea tree oil. It’s an intense, almost a burning feeling. I actually feel like I’m doing something wrong by not scratching. It’s taking a lot of self-control to just sit with it. It’s helping to type, but it’s still making me feel like a crazy person.
I called my OB’s office at 6 a.m. to let them know about what’s going on, and I’m still waiting for a call back at 2:45 in the afternoon. That seems like a crazy amount of time to have to wait for a member of my care team to call me back. I know that I need a blood test to check liver enzymes. I want to go ahead and go in and do it because it takes 5 days to get the results. At least I have an appointment already set up for Thursday. There’s really not a lot that I can do right now, though. I just have to be patient. *sigh* At least the kid is as active as always.
In the meantime, I’m gonna try to ignore it and attack my massive to-do list, starting with making sure that my hospital bag is packed as well as possible, putting up some laundry, and getting started on those baby shower thank you notes. I should probably eat some lunch too.
Yesterday, I hit my limit with rage porn on Facebook, so I took 24 hours off. I thought that would give me the opportunity to relax and stop getting so super angry with every annoying post that I saw.
Well, I was wrong. Time did not help. When I logged back in this morning, I saw a meme that both my mom and my mother-in-law had shared that was the internet equivalent of standing out on your front porch, shaking your fist, and screaming for kids to get off your lawn. Normally, I’d be able to let that go. But not today. No, I had to let them both know that they were being uncool and were better than that. That’s right. I mommied the moms. I actually went back to my comment 4 times, trying to figure out how I could change my response to be more kind and loving. Couldn’t change it. The voice in my head said, “No. They need to know.”
The Dark Side is strong with me right now… and I’m not proud of it.
So, I’ve decided that it’s time for me to take some serious time off from Facebook. If I can’t even be kind to my moms, I have absolutely no prayer of controlling my bitchiness with anybody else.
If I could magic Facebook into the medium I want it to be, I’d only be reading personal status updates that have to do with what’s actually happening in the lives of my family and friends, reading articles about things that make people happy, and watching videos of cute animals — and that’s it. The only way to make that reality happen is to actually contact the people I care about to catch up with them and share my daily awesomeness here. I’m not going to quit doing the things that help me keep good mental health just because I’m not doing them on that platform. And I know it sounds crazy in this day and age… but I’m going to actively check in with people to see how they’re doing… like it’s the 90s or something. Odd as it seems, I actually believe this will strengthen my friendships.
3 Great Things About Yesterday
Adam had prepared me for him having to stay late at work — but when regular quitting time rolled around, he was actually able to come home.
Getting super frustrated and angry about the rage porn on Facebook helped me to actually willfully ignore it and spend the day doing things other than scrolling and reading articles online. I actually got more chores done yesterday than I had the entire previous week.
Had a good time brainstorming on a game that I might make.
What made YOUR Friday fantastic?
Scottish Fold kitties make my heart go sploosh!
Betty Who is my new girl-crush. Berklee alum to boot! 🙂 I’m really lovin’ this track. It’s got a really late 80’s, early 90’s feel to it.
It’s been a while since August 8. Lots of things have happened. That’s life! I figure that it’s time for a good update.
What’s new with my MS
The last time I took any kind of disease modifying drug to help slow my MS progression was July 11th, when I quit Tecfidera. For those of you who are not inclined to do the math, that’s about 6.5 weeks ago. I wasn’t even on a therapeudic dose long enough for it to be helpful for me, so if you really want to know how long it’s been since I was on medication to help my MS in any meaningful way, we’d have to look at when I stopped Copaxone, which was on June 2nd. This means that my MS has been running amok for almost 3 months. That’s an entire season!
Honestly, I miss Copaxone. I never thought I would say that, since I hate giving myself injections, but I haven’t been enjoying the come-and-go nature of my MS symptoms which are more pronounced since I stopped. Numbness and tingling on my left side and on my back has been annoying, but it hasn’t stopped me from doing anything. Fatigue has been significantly worse. Bladder/bowel stuff has been annoying but not disabling. Fortunately, I stay pretty close to a bathroom at all times. I’d hate to already be needing Depends. I’ve had spells of time when seizures returned with force. Last night, for example, was pretty tough, but today has been fine. I’ve noticed that getting enough sleep (which for me is apparently about 14 hrs a day) is absolutely necessary to proper bodily function.
By and large, I’ve been alright. I’ve enjoyed not dealing with any side effects from meds. I’ve enjoyed not injecting myself nightly, and I’m actually surprisingly optimistic about starting Gilenya (a once-a-day pill for MS) on Thursday of this week. I have to be at the hospital at 8 a.m. for the administration of my first dose. I’m hoping that the 6-hour observation period goes smoothly.
What’s new with the Paleo Diet
Well, first of all, I feel like an ass-and-a-half for sharing those ketchup recipes with you. I was so proud of my work at the time — but I’m really not pleased with what’s come after the first day. I’ve been using the stuff that I made for a few weeks now — and the first thing that happened with it is that the condiment got super thick, just like tomato paste. I have to dilute it with water every time I use it.
I intend to make another batch using a different recipe. This recipe is based on Heinz ketchup, and has gotten good reviews.
6 oz. tomato paste
1/2 c. light corn syrup
1/2 c. white vinegar
1/4 c. water
1 TBSP sugar
1 tsp salt
1/4 tsp onion powder
1/8 tsp garlic powder
Combine all ingredients in a saucepan over medium heat. Whisk until smooth.
When mixture comes to a boil, reduce heat and simmer for 20 minutes, stirring often.
Remove pan from heat and cover until cool. Chill & store in a covered container.
To make it paleo-friendly, I’m just substituting honey for the corn syrup and sugar. Because honey is 1.5 times as sweet as sugar, I’m only adding 1/3 c. for the whole recipe. I know agave nectar would be a better 1-to-1 substitute for corn syrup, but it’s also a high-fructose syrup (90% fructose, 10% glucose). Honey has a better ratio of fructose to glucose (40% fructose, 30% glucose, 30% other).
Several folks commented on the recipe that they subbed honey with good effects, so I’m hopeful that my next batch of ketchup lives up to my expectations.
As for other paleo-ness: Adam and I decided not to join in on August’s Whole30. I started making a meal-planning calendar and it just got too overwhelming. Right now, I’m just focusing on yummy, simple recipes. I promise I’ll share more.
What’s new with life in general
Well, this past weekend was all kinds of freakin awesome. My parents and my brother all came in town to visit me. It still weirds me out to think that Mom and Dad are in the rural sticks of PA and that Daniel is in Denver, CO. Some part of my brain still acts like I’m in college and they are still living together in our home in Collierville, TN even though we’ve all moved on with our lives. We’re all still really close and talk frequently, so it feels like we should just be able to hop in the car to see one another, but that’s not the case. We actually hadn’t seen each other since Poppy’s funeral last year.
This weekend was pretty great because we made a commitment to being relaxed. We went out for delicious (and very non-Paleo) meals, and otherwise, we just hung out – no pressure. Sure, my type-A personality required me to put together a wicked long list of things we could do, but it was more so that we could acknowledge that we had options and feel good about our decision to do nothing. 🙂 All that any of us cared about was just being together. So, Dad and Dan got to play chess while I showed Mom my Sims 3 game one day and after walking through a 4-story mall and hitting a bookstore, we watched a few episodes of Too Cute: Puppies back at their hotel room the next. I feel like I made out like a bandit, honestly. I got to spend time with people I really, deeply love, was treated to fantastic meals, and Mom even got me some nail polish and mascara. (BTW – I totally endorse Maybelline’s Volum Express Falsies Big Eyes Washable Mascara. It is the shit. It adds volume and length without being clumpy, and it doesn’t flake off.)
Other than that, life is good and simple.
I’ve graduated from cognitive behavioral therapy. My therapist is so pleased with how I’m doing that I only have to have a visit with her now if something comes up and I need to call her, which is great.
I’m no longer afraid to take public transportation unless I’ve had a seizure in the last 24 hours, so I can get out of the house fairly easily, and I actually do have places I want to go to from time to time.
As for other activities, I’m currently working on writing a novel — an activity which is simultaneously frustrating and entertaining. Currently, I’m only 2 chapters in, but I have faith that in time I’ll get through the whole story.
Adam and I are still working out at the YMCA at least 3 days a week, doing weightlifting on resistance machines and cardio on the elliptical or a treadmill.
And I’m still adding recipes to the Paleo Compendium every day, always in an effort to make my relationship with food easier and yummier.
I’m still butt-crazy in love with my husband after almost 3 years of marriage and 3 years of courting, and our dog is at least 5 times cuter and sweeter than he is a pain in the ass. 🙂 I really couldn’t ask for more out of life.
So you remember that self-care chart I was talking about? Well, I actually printed it out and am using it. It’s like I actually want to feel good!
Oh wait, I do! 🙂
Luckily for me, I woke up this morning feeling hopeful as opposed to hopeless, and that made it a lot easier to pull on some jeans and take my dog for a walk in the cold, despite the fact that I’ve injured my left leg during exercise at the gym. I’m not sure what I did to bruise my Achilles tendon, but it seriously hurts to even stand for very long, let alone to put weight on my left leg. I think that means I need to take some time off from the treadmill, but not time off from working out, because I need the positive effects of exercise for my overall health. Maybe I can talk Adam into swimming with me. The YMCA we go to does have a pool, and we haven’t taken advantage of that yet.
One thing that I am very proud of is that Adam and I are now regular gym-goers. We’re there at least every other day, working out. It’s been good for our health and for our relationship, not to mention good for self esteem for both of us. I know that I at least feel more empowered, and that I feel prettier and better about myself when we go. It’s also good to see Adam shake off the stress from work when he’s had a good run, and it’s been awesome to see how supportive we are of each other. I feel really lucky to have a built in gym-buddy in my marriage. I’m lucky.
The New Kitten Hotness
Last night, we headed out to Romeoville to pick up some new foster kittens. We now have two 7-week old kittens that we’re taking care of, and they’re adorable. We’ve named them Princess Peach (because she’s cream-colored and wonderfully affectionate) and Mario (because it goes w/ the Princess and he can jump extra high!)
In other news, I’m finally starting on a project that I’ve never done before: scrapbooking. I got a glue stick, a baby magazine, some cool paper, and I’m gonna see if I remember how to collage. A good friend suggested putting together a baby scrapbook to make the whole “having a kid” thing more tangible and realistic. I will tell you, just having a baby magazine and reading through it made the whole thing a little more real — and a little more scary. (Have you read the articles on cracked nipples? Just reading the term makes me cringe!)
Recognizing The Need For True Integration
And to be frank, even though the person who suggested that I scrapbook was Adam’s friend first, it doesn’t make him any less my friend too. For too long, I’ve had a really shitty outlook of “I don’t have any friends here.” and that really is a slap in the face to all the wonderful people who have taken me under their wing here as Adam’s wife. They don’t have to care about me, or treat me nice, but they do, and I’m thankful for that.
For the longest time, when I moved here, I was so wrapped up in the anxiety of how I felt about what was going on in my own life that I forgot that when I married Adam, I became a part of his family too. I saw myself as separate and apart from everyone else, and didn’t feel like a part of the Majka family, but just someone who wore the last name. It wasn’t until this past Thanksgiving that I really felt comfortable with everyone… and that’s two years into our marriage. And it’s no one’s fault but my own.
I think — no, I know — that half the time, I don’t feel comfortable in my own skin. And it can’t be comfortable for anyone to want to be close to me when I can’t be calm within myself. I mean, who wants to hug a ticking time bomb? I wouldn’t.
And that’s not to be down on myself. I’m just acknowledging that any sort of emotional intimacy is sort of impossible when you’re afraid to say or do the wrong thing. And I’m always afraid of saying or doing the wrong thing. The sad fact is that you can’t feel accepted if you’re always nervous because you’re constantly worried you’re being judged by others because you’re always judging yourself.
So I guess my job, having recognized that, is to learn how to stop walking on eggshells with myself…
I guess it’s time to get back to training self-compassion.
They had an Alice in Wonderland theme, and the event took place in a beautiful house with a view on the Bay that was breathtaking.
Of course there were the mandatory jokes about how great it was that each of them was marrying their spouse, but to be honest, as someone who had just celebrated her second anniversary with her husband, it was great to see 2 people who love each other so much at 10 years that they’d marry each other all over again.
To tell you the truth though, my favorite part of the event was seeing them interact with their 3 year old daughter, Lily, whom they had given up for adoption to John and Mikio — a wonderful gay couple who came in with her all the way from New York to attend.
And in a subtly-annoying-but-ultimately-serendipitous sort of way, John, Mikio, and Lily got tied up in traffic — so the ceremony that was set to start at 4 didn’t start until after they got there — much closer to 7 — which also happened to be the same time that Grandpa Ray made it to the party. And because of that, it was so much more romantic! Guests from ages 3 to 95 were there, and it was right at sunset, or twilight, if you prefer…
Lily was blowing bubbles through the whole ceremony and dancing and cheering. And so was my heart.
A child really is the embodiment of 2 becoming 1. You couldn’t help but see the beauty, joy, and femininity of Deb in her, and the strength, intellect, and attention-commanding presence of Jason all present in her at the same time. She made me think about what a child would be like if it were a mixture of Adam and me… and it made me want one all the more.
I’ve been really hung up on getting pregnant with Adam’s child and coming off of my meds in order to do so. Last week, though, I had to temporarily go back up to 60mg of Cymbalta because I was having suicidal thoughts again. I know for a fact that it’s a chemical thing, and not me, though. Life is so great right now, with Adam. We have family here in Chicago who love us, friends who like to hang out with us, plenty in the city to do and to explore. And there are always friends and family members that we love and want to visit all over the country, and even some in different countries. No, I want to live. I want to bring more life into the world — so any suicidal thoughts — I’m blaming those on medicine, or lack there of.
I was doing okay at 40mg for a couple of weeks, so we’re going to try to bring me back down again to that level over the next 2 weeks. Then we can do the 6 week taper to nothing.
Trying to come off of SSRIs is so much more difficult than I thought it would be. It requires far more patience with myself and with the process than I anticipated, and a stronger commitment to meditation than I previously had. It can only be a “some days” thing if I’m around friends and family. If I’m mostly alone, I had better be letting the thoughts go their merry way by order of meditation every day.
But, on the bright side, I’ve noticed a significant decrease in seizure activity. I don’t know if I can attribute this to the decrease in Cymbalta or to the increase in exercise, or some combination of the above. Either way: I only had 1 seizure while I was with my friends this weekend, and that made for a great mini-vacation.
All that, and I even made new friends at the party. In my new, pretty, shiny party dress.
*contented sigh* Life is good, readers. Right now, life is good.
My favorite pictures with my dad are the ones where we’re both smiling and flipping off Mom behind the camera.
And even though he’s on the opposite side of the country (which may as well be the other side of the world), and we’re not talking to one another, I have to say, rather proudly, in fact: I came my attitude honest.
This Father’s Day, I am grateful for the gifts of Pat Benetar, Jethro Tull, Styx, and Boston being consistently played in my father’s car stereo. For hours of giggling uncontrollably at a toy purchased at Spencer’s Gifts called “The Final Word” that taught me the phrase, “Eat Shit and Die.” which was, of course, only to be used in traffic (with closed windows!), and for his bleeding-edge tech geekery, which meant that I was privileged to learn on top-of the line equipment from such a young age, I never knew how special and amazing a gift that it was until I was an adult… which lead to me thinking, for a little while there, at least, that my shit didn’t stink. (Good thing I grew up! Nothing stinks like unacknowledged privilege.)
To all the fathers out there, taking care of of your children: remember, they’re only kids for so long! Take an interest in who they are and what they want to do. You’d be amazed how one afternoon can make a lifetime memory. Your children are not actually interested watching you play video games. They just want to spend time with you. Interact with them! You can make all the difference in their world.
I’ve been asked, several times, how it’s possible for me to keep such a positive attitude when MS has had such a profoundly negative effect on my life. That’s a VERY fair question.
If you read my previous entry, you’ll notice that I’ve taken to personifying whatever symptom is affecting me, and talking directly to it. This is not an accident, and, believe it or not, it is not insanity either.
See, when I first was diagnosed with MS, I believed there was something wrong with me, and this lead to severe depression… because if the doctors didn’t know what caused MS, and they couldn’t fix it, odds were, it was somehow my fault.
Not only was I feeling physically miserable, but emotionally, I was in tatters because every physical ailment was potentially going to stick around forever, and it wasn’t just because of MS. It was because of me, since it was probably my fault that I had MS anyway, even though I didn’t know how I did it.
Then it got worse. I saw how badly my family and friends were affected by my illness. And since the illness was obviously my fault, I saw how badly I was constantly hurting my family and friends, simply by my continued existence with the disease. Enter suicidal ideation, stage left.
When persistent suicidal thinking enters the picture, rational thought has left the building, and it’s time to re-examine whatever situation you are in with a trained professional.
Fortunately (or unfortunately depending on your viewpoint), I was equipped to deal with this situation, having chosen to hospitalize myself for suicidal depression back in 2003… which, I now know to have been during an MS exacerbation that was pre-diagnosis.
The best thing that I took away from that experience was the knowledge that I should always trust my support network with the knowledge that I am having suicidal thoughts (because the worst thing you can do is keep it to yourself and let the shame spiral continue), and that I should always ALWAYS have a psychologist available to myself in case I needed one. So, when this occurred, I already had one in town with whom I had built a good, trusting relationship.
Dr. K (I prefer to call her Amy.) asked me a series of questions that made my life so much better.
“Did you actively choose to have MS?” Obviously, the answer to that was no.
“Can you control anything at all that the MS chooses to do?” Again, the answer is no.
“Do you have any knowledge of what the MS is going to do in your body prior to it happening?” No.
“If you could stop it, and make it go away, would you?” I just about SCREAMED, “YES!!!”
And then she said to me something that absolutely changed my entire life.
“Well, it sounds to me, then, like Multiple Sclerosis has a mind of its own, and is an uninvited guest in your body.”
Suddenly, having MS wasn’t a personal failure. I was carrying around an uninvited guest. No wonder I was so tired all the time!
Through later sessions with Amy, I learned to regain a sense of self and a sense purpose and to improve my relationships by making room for MS in my life — to recognize when I’m angry at someone vs when I’m angry at MS, so I don’t do things like yell at my mom when I should be writing journal entries.
I’m learning to honor MS’s needs by going to bed when it tells me it needs to, and eating the right foods, so I have more time to do the things I want to do.
AND, now that Dr. Zamboni’s found out about the vascular part of our disease, it’s even less likely that developing MS was my fault to begin with. Guilt = GONE.
And that’s the story of how my MS ended up with a personality, and I ended up having the disease while still being upbeat about life.