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Plodding in the Desert

Hope Coloring Page

I’ve been spending time in the desert lately. Things have felt dry and parched and starving for refreshment. I’ve traveled this terrain enough times to know that there is purpose in it, but it doesn’t make the journey any easier.

Since the beginning of this year, I’ve felt a shift. That’s the only way I can describe it. Something is different with my health, but I can’t put it into words. My body feels tired all the time and it’s really hard to process that. I’ve shared these feelings with a few close friends and Chris (of course) but it’s made it difficult to write. I’ve needed a lot of me and Jesus time, with no other voices involved.

I’d like to tell you that I’ve sorted things out, but I haven’t. God’s given me a few incredible gifts along the way…things I think he knew I’d need to keep on pressing on.

One thing I do know is that along with this “shift” has come an even greater urgency for me to share with you how real God can be in your life and how very much he is needed.

It’s been a tough year so far with my health. I shared in my last post about complications with an infection in my foot. Shortly after that, I took a hard fall to polished concrete at my favorite restaurant on a date night with Chris. Ironically, Chris was about the only person in the restaurant to NOT see me fall. After a few weeks of feeling as if I’d been hit by a bus, I went in for X-rays to check out (what I thought) were cracked or bruised ribs. It turned out that I had a compression fracture in my vertebrae just below my fusion in my thoracic spine. The assumption is that is happened because of the fall, but much like a cracked rib, the only pathway to healing was time and rest. Months of time and rest.

Which brought us to the end of March in which Chris and I took a belated Anniversary trip to Puerto Rico. The warmer weather and steady climate did wonders for my pain, but the endless hours to lay around on the beach and “think” were a surprise I hadn’t bargained for. Finally on the last night of our trip, over an amazing dinner, I apologized to Chris for being so quiet the whole week (my timing is impeccable, I know). I told him the more I tried to figure out why I was so introspective, the more introspective it had made me. (Introspective is a fancy word for quiet and boring).

And then it hit me; this was the first time Chris and I had done a beach vacation…just the two of us, no family or friends…in five years. And in five years, my body has changed a lot. I had a major spine surgery that changed my entire neurological makeup along with shortening me an inch (still peeved about that one…) and an ileostomy bag placed. So to go on a vacation where you’re pretty much living in a bathing suit 24/7, was hard on me. I felt self-conscious and embarrassed (for Chris) the whole time. I was frustrated that I had to use my wheelchair so much, because getting around at the pool without my leg braces is hard and dangerous. The stares bothered me more on this trip than they ever had before. And it bothered me that it bothered me.

puerto rico

And it hit me afresh like a tidal wave that my health is not getting any better, but in fact is getting worse.

I keep having this re-occurring nightmare where I show up at the office of my Neurologist. In my dream he’s a faceless individual…older, kind…but I never am actually called into be seen by him. The dream progresses (they improved the elevator in one of them…) and I see him in the waiting room, or at a coffee shop in the hospital lobby, but I never hear his diagnosis of me and I never actually get real clinic time with him.

It’s troublesome to me and I think it probably has to do with a pending appointment I have with a new local neurologist here in Milwaukee in June. I’ve had the appointment scheduled for several months now, after my primary doctor urged me to find someone to look into a tremor that I’ve developed. They think it’s further autonomic dysfunction due to my deteriorating nervous system, but it would be good to rule out any other neurological causes (MS, fibromyalgia, parkinsons, etc.).

And I think that’s when I start to come full circle about this “shift” I’m feeling. I think part of this shift is that I no longer have a great desire to figure all this out. I’ve gotten to a point where a diagnosis is just a name. I know there is no solution, no cure, and so it all seems so futile to me. But I have this internal wrestling going on inside because I would never want Chris or Promise or anyone that I love to think that I didn’t try my hardest to live the longest, healthiest life I could.

And so that is a small window into what my desert has looked like lately. Ironically, all of this comes after giving a talk titled “The Battle for Hope- How to Keep Getting Up When You Get Kicked Down” at our Church, Elmbrook, in early March. How I’ve listened to my own advice over and over and over. I’ve repeatedly told myself that it’s not about feeling God, but knowing the truth of God. It’s about making a choice to keep plodding along, even on the hardest, driest days….that somehow God will not let that go in vain.

I was laying in bed last Sunday night, Chris silently sleeping beside me. My health and the future of my health felt like a weight on my chest and I was silently trying to muffle my sobs. I felt a nudge from the Holy Spirit to get out of bed and get on my knees by my bedside. Again, I knew it was God’s spirit because it’s not a thought that would naturally come from my human-ness. I mean getting on my knees is hard for me. It hurts. My left foot is at a permanent 90 degree angle, so it’s uncomfortable. Really awkward.

After a few moments of wrestling in my head with whether or not I was actually going to do this, I slipped out of bed and onto the floor. And I wept. And I surrendered my health to God, afresh…asking him to take it all. As I crawled into bed I had the most incredible peace where the heaviness had been. I wanted to read my bible but it was down in my car, so I opened up the bible app on my phone. Apparently the last time I had been reading it had something to do with looking up the verse we named Promise after; Psalm 145:13 NIV.

As my eyes read through verse 13 and into verse 14, my breathe caught in my throat. I had never paid attention to the verse following “her” verse but it read:

“The LORD upholds all who fall and lifts up all who are bowed down.”

I know that no matter what lies in front of me, or for however long this desert period lasts, God will lift me up if I continue to bow my life to him.

-Adri

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Top Ten Ways a Disability Prepares You for Motherhood

Milwaukee_Logo_Stacked_Black

Recently, I was asked to write monthly for a blog called MKE (Milwaukee) Moms Blog. The site is a local resource for moms in the Milwaukee area; a place to find support, advice, and connect with other women both through screens and in real life. You can learn more about the site by clicking here. It is a sister site of a nationwide site called City Moms Blog Networks. If you don’t live in mke, you should check it out and see if they have a site in your city!

Writing for MKE Moms Blog has proven to be a fun adventure thus far and provides outlets for me to write about topics other than my pain (because believe it or not…my life does not revolve completely around my disease) and to use humor in my writing. Humor has been key in getting me through so much of the pain and so it’s fun to be able to share a slice of that.

My first post, “Top Ten Ways a Disability Prepares You for Motherhood was featured on the site yesterday. As medical technologies progress at the rapid rate that they are, we will continue to see an increase in women with a wide array of abilities (or disabilities) enter the mommy community. Hopefully this post will shatter some of the pre-conceived notions you might have about parenting with a disability. While there is no doubt that it comes with challenges, I’ve found that so much of what I’ve experienced has prepared me for motherhood better than any parenting book ever could have.

You can also read my bio and get to know the other (amazing) contributors by clicking here.

Happy Parenting!

-Adri


A Restful, Invigorating Inner Climate

Two weeks ago tomorrow Chris and I found ourselves walking into the Columbia St. Mary’s Cancer Center building in downtown Milwaukee. Having spent a considerable amount of my life in medical buildings, I was struck with how peaceful this particular clinic was. The east wall of the waiting room was solid windows that displayed an impressive stretch of the Milwaukee Lake Michigan beachfront. There was a courtyard with cascading waterfalls and fragrant flowers. As I walked through the “chemo area” I noticed boards on the wall where patients could post notes about things they were thankful for. I couldn’t help thinking that maybe all hospital buildings should embody this same concept.

The appointment went as well as it could have. My doctor was kind and personable and even has a seven year old child, to boot!There was nothing glaringly obvious indicating cancer but on the same token, he wants to look further into the cause of these night sweats and my elevated eosinophil count. The type of night sweats that I’m having are typically indicative of something awry with my immune system. We talked through our game plan, which is essentially a few months of lab work, scans, possible biopsies, and lots and LOTS of waiting.

Tomorrow (Wednesday, 8/5 at 10:15 am) Chris and I will meet with my hematologist, again, to discuss the results of a blood smear that he ordered at my first appointment. For the past two weeks, he’s been studying my blood under a microscope, trying to discern and observe how my white and red blood cells reproduce. I’m continually fascinated by the way God has created our bodies and the knowledge he has given doctors. Tomorrow we will find out if my cell reproduction is normal or if there are irregularities. This will be a good indicator of whether or not there is a blood disease or infection going on. If he has noticed something “off”, I will go in for a bone marrow biopsy that would be extracted from my hip, in order for him to then study my stem cells. If my blood looks normal, I will most likely proceed to seeing a bone specialist to try and determine if these night sweats could be caused by a slow moving, underlying bone infection.

I also had an echocardiogram about a week ago to ensure that “all is well” with my heart and the vascular system that moves my blood in and out. This was precautionary more than necessary. Precautionary, so as to make sure that no sneaky infectious bacteria has decided to settle in and set up shop in my arteries.

An echocardiogram can only show what is physically taking place in my heart, though. If someone could invent an echo that showed the emotional and spiritual well-being of my heart, the results would look a lot like the cancer building I described above. On my heart wall, you’d be able to see a large “Thankful Board” on which I’ve been mentally posting little notes. One of the notes would have a quote scrawled on it that says,

“I’ll be praising God for all eternity, but only during my brief time on earth can I bring Him joy through praising Him in the midst of pain.”

This is a quote from the book “31 Days of Praise” by Ruth Meyers. After reading it, I immediately posted it securely to my heart wall.

I really have no “gut” feeling about what tomorrow’s appointment will bring. But I do know that God has been conditioning me for over 20 years to praise Him in the midst of pain, so no matter what the results of my blood work show, that is what I’ll do.

“Even in troubled circumstances, or when God does not choose to work in spectacular ways, praise can help us view our situation through different lenses. It can help produce within us a restful, invigorating inner climate.” -Ruth Meyers


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