Spoons

The Spoon Theory written by Christine Miserandino

I wanted to share this for a couple of reasons, but probably not why you’d think. I think it’s helpful to make people aware of how you can support someone with an invisible disease because it’s just not something we want to advertise all the time. We have the tendency to look fine on the outside, so others just assume we are ok. Even my therapist says I can kept her fooled until I finally chose to take off my happy mask and talk about how I really feel. I want to look ok. I work so hard at it. I don’t want to be defined by my headaches, but they are, unfortunately, front and center 24/7. They affect every aspect of my life and therefore greatly affect the lives of my boys. It is a constant coping process-being able to be at peace with the fact that this is life while still always holding onto some hope that we will find new answers. But to live in a state of waiting, being *too* hopeful, leaves you in a dark, disappointed place if you don’t handle with care. Hope unfettered leads to bitterness. That’s not Biblical, (maybe the Message?😆), but I just think everything should be in moderation. …or I’ve just gone more dark and twisty that I realized! 😂I’m learning that an important key to my happiness is being able to be ok with where I am while still putting one foot in front of another. And laughing. You gotta laugh.

But in reading some articles today about chronic pain, I was thinking of those who support me. Being in a support role has got to be incredibly difficult, especially when there is no end game. It’s not like I’m recovering from surgery or an illness. My family has to adjust to the fact that this is life just like I do. My precious husband has watched me endure so much pain in our 15 years of marriage, I’m surprised he hasn’t run for the hills. Sometimes I think it may be more emotionally draining to be the caregiver than to be the one in pain. I see how helpless he feels. He works a job that demands a lot from him all day, and when he gets home there is no rest in sight. He comes home and takes care of us. It’s not unusual for me to pass the baton and go to bed at 6 or 7 if it’s been an especially hard day. The guilt I feel that my kids are growing up with a sick mom is overwhelming. Yet, I grew up with a sick mom. I know so many who had illness in their family growing up. Are any of us a stranger to hardship of some kind? This is what I have to remind myself, and my kids, lest anyone get to caught up in our own pity party. We all struggle. I know that it is not only ok, but maybe even a good thing for my kids to learn how to take care of themselves and our family. They simply must learn that we are a team. They don’t have a helicopter mom because I can’t and for this reason I’ve been super proud to see so much of what they can do for themselves. And lately Hubs and I’ve been empowering them to take care of each other. They keep surprising themselves with what they can do when a parent doesn’t step in a save the day.

Being in chronic pain means I have to be so careful with my energy and who/what I spend it on. I have grown so particular with how I’m social and what I can handle, and that’s a very hard concept to explain to people when it comes to be having to pick apart which social events I can attend. It might turn out that it’s too windy for me to go to your bbq, or too sunny for the pool. Too cold at the Christmas party, too much activity at your game night, too much walking for that sporting event, too much perfume from that one person in bible study that triggers a full on migraine attack-can’t go, or I just already spent my spoons on my family today and no matter how much want to, once I’m out of spoons, I’m out of spoons. There’s no pushing thru. There’s just the wall. The wall is bed. Or the Hospital. And you stay there until your energy source says you’ve earned back enough spoons to do another activity. Just remember, it’s far easier to lose spoons that it is to earn them back. Womp.

What I thought of the most while I reading this was how many people have come in and out of our lives over the years as my health has declined. My migraines are a handicap. I’m a wildcard. We are the friends who always need help with something. We are the friends who may cancel on a second’s notice because I couldn’t leave my dark bed. I’m the friend who complains. That was hard to admit. I don’t want that to be true, but I know it is. I’m the friend who needs a ride to the ER and will try to suck you in for the whole visit. And yet, I have 2 handfuls of friend who keep. coming. back. Friends that will lay on the couch with me, cry with me, clean my house, feed us, take care of my kids, take me to the hospital, make me laugh, and so much more. That is love. I feel a lot of love in all this pain. I’ve been wanting to write about it for weeks now, as I’ve just been overwhelmed with gratitude for all of you in my life. All of you that have a healthy respect for the pain that grips me and acknowledges it accordingly, but you see me as so more than that…You’ve helped me to be something other than a migraine. To all my people who love me despite my invisible mess, I’m so grateful.
That’s beauty from ashes.

Heb. 6:19
Thanks, Villiage

Migraine Day 15

Friday morning I woke up and just knew it. It was time to go to the emergency room. It was day 15. I had been fighting this migraine for over 2 weeks and there comes a day when you just have admit defeat and ask for help. This happens every now and then. Most migraines last several days and eventually I can fight them off with the meds that I have at home. But after this much time, it’s not just that the pain is too much to bear, it’s also that I’m not sure how much more medication is safe to put into my body. I worry about that so often. What are these meds doing to me? I try to just shove it down. I have no choice (at least not a reasonable one), and I don’t know what to do about it.

So, I woke up Friday morning and the pain was searing, throbbing, dull, sharp, all of it. I was afraid to get into the weekend where we couldn’t get in touch with my doctors to back me up once I was in the ER. Last time I was there, the ER doctor on my case was very difficult. I learned that without my neurologist to back me up (which she did), I could possibly wait all that time, get back into a room, and get denied the treatment that has worked now for 4 years by IV, because my hospital has made changes to their policies on pain management. I needed to be there while my doctor was in her office.

Another thing I’ve learned about going to the ER for a migraine: Don’t go alone. I have an invisible disease. Any invisible disease requiring pain meds automatically makes you an alleged drug seeker. I’ve been in the hospital a couple of times without DH and I have been shocked at stark contrast in treatment. It’s inconvenient, it would be so much easier to have him stay at home and take care of the boys while I do my thing (which is pretty straightforward), but nope. He has to be with me. There’s no way around it.

I am so grateful that we have good friends. I had several friends that I knew I could call to help with the boys that day. One was over within 45 minutes, and never even blinked about the fact that I turned her entire day upside down. Her family ended up taking care of my boys from around noon until 9 o’clock that night. Amazing.

Once at the hospital, we waited maybe 3.5 hours to finally begin the first phase of treatment. I wish there was a Migraine IV Drive-thru somewhere. Just put in the IV, we already know what works, in and out, let’s not waste a room on this. It just feels so silly. We did end, however, end up with one of the most competent, thorough doctors I have ever had that evening. He actually took the time to go through my records from the past several years of ER visits and check on my migraine treatments to see if there was anything else that we could do to help. No ER doctor has ever done that before, and he did find a few ways to update my treatment that night. After 2 examinations, 10 shots of meds, 2 liters of saline, 1 mild side effect, and a partridge in a pear tree, I was in far less pain and we were finally done. It’s hard to describe how it feels once I’m that medicated. Everyone very much wants to hear that that I’m completely better. But I’m usually not. I was reading a migraine blog recently and a guy said it perfectly*: “It simply feels like – this is hard to describe – a sheet is draped over the pain and is held down. The pain is still very much recognizable to me. I can feel its presence, but it is held down.” ( That was how I felt when we left the hospital. I knew it was there, deep down, but it was nice to suffocate it some, finally.

This is how it works: You take some kind of migraine med (Imitrex, Maxalt, DHE) and/or a “cocktail” of meds (group of 3 meds together-Reglan or Phenergan or Zofran or Compazine, and Benadryl, and Toradol or Ibuprofen) to treat the actual headache. Then you get pain meds for, well, the pain. If you only take the pain meds, in a few hours you are going to be stuck with the same headache you had before because you didn’t do anything to treat the actual problem. And this doc included some steroid treatment as well.

And I have almost all of these medications at home. I had been taking them for weeks. But getting them through an IV, all at once, gives that headache a punch that it just doesn’t get when you take the meds orally.

Saturday morning, my big boy had a football game that was a good 45 minutes to an hour away. There was no way I would be able to get up that early and then sit out in the weather, so I stayed home with the baby. I woke up with…a migraine. Dude. I got a cup of coffee, tried not to panic, and went to stare at my medicine cabinet, wondering what on earth to do.

I called my neurologist and we came up with a plan. By that evening, things were feeling a little better. I’ve taken this weekend really easy, really slow, and I’m hoping that the Migraine From Hell is finally dying a slow and painful death.

When I get an attack that lasts this long, I have to really analyze what I’m doing to antagonize my body. Something is causing it. Something is continuing to perpetuate it. I’m trying so hard to stick with the Xr Epigenetic program, and I think the progress is coming along, albeit extremely slow. About 3 weeks ago I switched over to soy milk. I like it so much better than all of the nut milks, but I had suspected a while back that it might be irritating me. I had pushed those suspicions aside and decided I could use in in small quantities in my coffee. It’s the only change I’ve made, and it would make sense that if hormones are a trigger, soy would be a problem. I’m more than a little annoyed to be removing another thing from my diet. Soy is so complicated. It’s in everything. But I do wonder if it could make a big difference. So now I am wheat free, sugar free, gluten free, dairy free, …and soy free. It’s not as freeing and you would think.

 

 

*Not sure why my link function isn’t working, but here is the blog referenced above: https://migraine.com/blog/patient-perspective-opioids/

 

It’s All Me

I’ve read in several places where some mamas are getting some things off their chests about Christmas. The feeling is that Christmas is a massive production and without us, it would never happen. I think by about this point in the show,  some of us may be starting to feel a bit unappreciated, and are really needing to remind anyone with a WiFi capable device that we are the people coordinating the magic that everyone is enjoying during this lovely holiday season so would it kill you to look up from your peppermint white hot chocolate and say thank you dadgummit?
I know that if there are any men out there who are like my husband, you are saying, “hey! I’m no slouch! My wife isn’t the only one making Christmas magic at my house!” And while I can tell you that, without a doubt, my husband is the jingle bell to my rock, 100% of the holiday festivities that go on in this home would not happen if I wasn’t shoving them down the track like a freight train. I prompt them all. And I love it. I love my job. It may be thankless in the more obvious ways, but here is the thing about Christmas magic: Part of its magic is the fact that it seems to just…happen. If my mother had spent my childhood Christmases telling me ALL
about how hard she was having to work, and what a thankless job it was to be mom at Christmas, I probably wouldn’t have grown up with the nostalgic warm fuzzies that I feel when I remember them.

What I hope I’m getting across is this… I work so hard all year long to instill gratitude and respect in my kids. I hope at Christmas they can just enjoy the magic, the beauty, all of it, and not really worry about where it came from. One day,  they will know. One day they will be working their little tails off, trying to manufacture “magic”, and hopefully I’ll still be around so that they can give me a call. Heaven knows I wish I could call my mother so badly. If she were still here, I would, NOW, tell her “Thank you, mom. You made Christmas amazing and beautiful for me. Now I know how much work that was,  and I never heard you say a word about it. You must have been exhausted, because Mama, I’m exhausted. Thank you.”
For now,  my thank you will be the things my oldest son does as the Christmas season approaches. Like, when he pulls out his favorite ornaments so lovingly, or when he gets excited and says, “are we going caroling?”
He has it! The warm fuzzies of Christmas. I’m so excited that I have been able to foster that feeling in him about Christmas. What an incredible job I have. It’s all me.

“Onlys” on Sibling Day

Thinking tonight about all my only child friends and kids today. Because of social media, “sibling day” may go from a silly unknown to a real thing. I saw B long for a sibling for as long as he was aware, and it was so painful to watch. Baby A may be the most cherished sibling I have ever seen, by his big brother who wanted him so badly. For my “onlys”: remember that adopted family, the friends who we take in for life, are true gifts from God and can be just as amazingly special as any sibling. We just have to nourish those relationships and commit to them. They are so worth it. Oh, how I adore the other “sisters” I have in my life! The ones my kids will grow up calling Auntie. Priceless. 

I love kids

Every year in February, our church is part of a rolling homeless shelter called Winter Haven, where we house some men for a week, and take care of them during the time until they move on to the next church, keeping them warm for the winter months. (Side note: I’m ALWAYS humbled by how Lis and the men of our church give up so much of their time and sleep to stay up at the church during this week!) Last night a few of us were hanging out there and Kim ‘s son was just so cute, making the rounds like these guys were his bestest friends, telling them all about his plane (and they all listened intently :)). Kids are awesome. Sometimes we can be intimidated by the situation these guys are in, and maybe standoffish, but really, none of us are more than just a few steps away at any given point from some really horrible luck. The streets may smell bad, people may have issues that we think we’d never fall into, but- NONE of us is better, and I love that sometimes it takes a kid to walk around and remind us of it. That’s all.

Bedtime prayers

B tonight:
“…and thank you God for Mom and Dad and Mason. And thank you, Lord, for Baby A. He was really worth the wait. In Kindergarten I kind of lost my patience and I asked when you were going to give me a brother. But then we got this house, and I found out that we were going to get A, and he is really wonderful. ….I’m happy we waited for him.
In Jesus name I pray, Amen.
Wow, Mom. That was a really long prayer, wasn’t it?”

Oh sorry, B. I can’t answer you because of ALL THE CRYING.

Goodbye 2014!

Hello 2015! This is only a snippet of the awesome people we got to see as we said goodbye to the year last night.

While pondering it, my first thought was that there was no way that 2015 can compete with 2014. What an amazing year it was! So much waiting and longing in our life came to fruition! This will be the first year of my life, though, that I will ever have lived out as a mama to 2 boys. This will be the year that, Lord willing, our adoption becomes complete, our baby boy starts walking and talking, and our big boy will grow and mature in so many ways that it just brings tears to my eyes.

So, I leave you with a conversation I had with my big boy (B- 7y/o) while he was giving his baby brother (A- 3m/o) a bottle for the first time yesterday.
B, to A (whispered right down close to his face): “I love you, A.”
Me: “You know, one day, he’ll be big enough that he can say that back to you. I remember when you first said it back to be as a little boy. I thought my heart might burst, it made me so happy.”
B: “Yeah, and one day, he’ll say, ‘I love you, too, B!’ And my heart will want to burst. And then one day, I’ll have my own sons, and they’ll say it, too, and A will have his own, and our hearts will be so happy.”
Me: “And you know where we get all of this love? God pours it into us so that we can share it.”
B: “‘We love because He first loved us’, right?
Me: *heart bursting*

Happy Happy Happy New Year!!

Feel the Love(ie)

Guys, I love me a lovie. Give me a baby and I will do my darnedest to help him self-soothe. Key in that effort is The Lovie. I tried so hard to choose my first son’s lovie. I sweetly rubbed beautiful embroidered blankets up against his infant face for months. And yet, against my will, he attached to a soft, warm set of infant winter pj’s. They are hilarious.

Poor kid was almost asleep when I made him sit up for this picture. 🙂

Our second son, however, our new baby boy has cooperated with my Lovie Wishes! I was so surprised to see him attaching to a blanket, without any of my manipulation at all! I think I may have mentioned in my last blog, my sadness at not having a blanket made by my mom (as B did). But so many loved ones gave our sweet baby boy such precious blankets, constantly reminding us that he is loved dearly.

We love them all, but the blanket he fell madly in love with was from our Christy. It is a soft blanket from Pottery Barn, with satin edging, and his whole name embroidered across it. When we touch it to his sleepy face, his eyes roll back in his head and then softly close. He can hardly fight it. And it is precious.

If we learned nothing else from our experiences with Lovie and B, it’s that if you can find a backup, you should! So Pottery Barn, you should be expecting a call from us very soon.

One Sleep ’til Christmas!

That’s right! Knowing the you are one sleep away from going to pick up your long-awaited baby has got to be the closest thing an adult will ever get to remembering what it felt like to be a little kid on Christmas Eve. I’m too excited to sleep!! And I really should sleep while I can.

I’ve folded the blankets my mom made for B tonight, wishing so hard that she were here to make one for her newest grandson.

I’ve completely rearranged the nursery. 🙂

And we had THE toast. Husband and I have carried a bottle of sparkling cider around in our fridge for over 5 years that we bought one day at IKEA, back in 2009. We had thought we were pregnant, or that we were about to be, or something, and we had planned to pop it open to celebrate. Well, when we found out we weren’t, we stubbornly decided to save that bottle, month after month-to celebrate with on that day we would find out we were “with child”. There were days in these past 5 years that I looked at that bottle and wanted to smash it against the wall. But tonight we decided to celebrate our “pregnancy” by cracking it open. And tomorrow…Christmas.

Unpacking Thoughts

Some thoughts: 1. I enjoy unpacking much more than packing. It is so rewarding! 2. A neighbor came to meet us while my husband was flying the “Come and Take it” flag in our new front yard. He didn’t mention it and I had forgotten it was up. I guess we’ll just always be “that” family. Wait till they see our red carpet! 3. My big boy is so nervous about starting a new school tomorrow and I want to take it from him! It is so hard to watch your kid go through this stuff. He’s had a lot of change in the last few months, though, and he has been an absolute champ. I can’t wait to see him rock being the new kid.