Salty Zebra

This is not a how to post, I'm writing to let you know that you are not alone. One of the most common complaints you hear in the chronic illness community is over bad doctor appointments. Now, I'm not talking about ones where they give you a tough diagnosis, ironically we call these good appointments because we actually got somewhere we can work from. I'm talking about the appointments where your condition is misunderstood, your symptoms are brushed off, and you leave feeling hopeless and helpless. Those are bad doctor appointments and, sadly, I've had two of them recently.  The first one, a neuro PT appointment actually, was with one negative type of medical provider. This one thought they knew everything there was to know about Ehlers-Danlos Syndrome (EDS) . While at first this seems better than those tropy doctors that have to pull out their phone and Google it, in reality it can be much more dangerous. You see, this provider had seen a couple, meaning 2, patients wi...

 Ever since my brain tumor and surgeries, my husband has stated time and time again that I am, "More Spunky." I've been trying to pay attention and figure out why this is. Turns out my personality hasn't changed, my filter has just become defective!  We all have an internal thought life. As we look at things around us, our brain processes what we see, and we think about it. You might notice a beautiful sunset and admire the color palette in the sky. You might wonder why someone would wear that shirt with those pants. You might wish you were at home taking a nap instead of wherever you happen to be at the moment. This is completely normal and everyone does it, it's a part of how we experience the world. The challenge I happen to be facing is that my internal life is slipping into my external one.   On several occasions recently, I've caught myself by surprise as I realize that the thought I had intended to be inside my head had come out of my mouth instead! And...

   As a young wife and mom, I struggled. I was also young in my faith, having only started walking with Jesus a few months after my first son was born. Everything was hard. I had four kids under 6, one of them newly brought into our home from a war-torn country with all the trauma that goes along with it. The other 3 were no cake walk either with serious food allergies that had to be catered to, making it so that I had to make nearly everything we ate from scratch. I was also in the early years of my marriage, and we were simultaneously learning how to be good Christians and good spouses, and had mastered neither. I heard the story of Esther, and I wondered, could God have brought me here for such a times as this?   Fast forward several years and I’m two years into braces, not a fun journey, and facing complete reconstructive jaw surgery. Months of recovery while trying to balance caring for and homeschooling four kids. My husband was travelling regularly, being gone...

 I have an Adult Pilocytic Astrocytoma. That's a WHO Grade 1 benign brain tumor. So really, it should be no big deal, right? That's what I thought when they told me, and for nearly a year afterwards. Benign sounds, well, benign right? From Webster's 1828 Dictionary (the only real dictionary 😉): Benign BENI'GN, adjective beni'ne. [Latin benignus, from the same root, as bonus, bene, ancient Latin benus, Eng. boon.] 1. Kind; of a kind disposition; gracious; favorable.      Our Creator, bounteous and benign 2. Generous; liberal; as a benign benefactor. 3. Favorable; having a salutary influence; as the benign aspect of the seasons.      The benign light of revelation. 4. Wholesome; not pernicious; as a benign medicine. 5. Favorable; not malignant; as a benign disease.  Doctors seem to want to make you feel like you're doing good, you've got a win, everything's fine. They tell you, "Good news! Its a WHO Grade 1 benign tumor." You walk away thinking...

   In case you didn't know, as I didn't until recently, May is brain tumor awareness month. I decided a while back that I would be honoring this month in a variety of ways, and as I was working on putting these wheels in motion, I also found out that May is Ehler's-Danlos Syndrome (EDS) awareness month AND Lyme Disease awareness month as well! Being that these are my three main diagnoses, I was pretty surprised to find that they all had the same month where they were highlighted. You'd think I was born in May, but I wasn't, I was born in July. At first I started to back pedal my brain tumor awareness agenda for my blog and Facebook, but then I began to feel more and more clearly that this year I was just supposed to focus on brain tumors, and so I will. Who knows, maybe next year I'll be highlighting Lyme Disease since that is the one I've written about the least?  Brain tumors are not as rare as you might think, and more than one million people in America a...

   Last week I did my regular checkup and MRI for my brain tumor. I have had a lot of neurological symptoms, so we were a little concerned going into this one. We had decided in advance though that regardless of the outcome, we were going to do our big Disney trip coming up in May. That made me feel a little better, but I'm not excited about the idea of doing radiation, so I was probably holding my breath a little.   As I mentioned in this post , the whole idea of living six-months at a time, essentially living life on a lease, is overwhelming. You don't know quite how to feel. You don't know quite how to plan. You just don't know, that's the kicker. I get that no one knows , but still, for the most part you can make plans in life and know that you will likely get to follow them through.  So we got up at o-dark-thirty to head into the city for my MRI since traffic is so bad at that time of day. We made it with some time to spare though, so we sat in a waiting ro...

 In my youth and my young adulthood, I was a slave to the "What-ifs." "What if my husband doesn't make it home from work?" "What if my child falls ill?" "What if we run out of food on the table when company is over?" I combatted these fears with plans.  If my husband was 20 minutes late on his way home from work, mind you his commute could range in length from an hour and fifteen minutes to three hours,  I had his memorial service planned, I had figured out what job I was going to try to get and had figured out child care.  I think that was my meager effort to control what was truly out of my control.    Then, as I approached middle-agedness, my anxiety began to increase. I could no longer plan my way out of my fears. They were things like,  "What if my kids don't want to have anything to do with me as adults?" I didn't know what I would do, how I would handle it, what could fix it. I struggled with anxiety and d...

 We smirk at the toddler stomping in the kitchen saying she can do it, "By Myself!" We shake our head at the senior citizen driving by braille down the road. But we each have a bit of an independent streak in us. We'd like to think that we can handle things on our own, that we don't need help. And when it gets suggested that maybe we shouldn't be doing something, watch out!  I've always been pretty fiercely independent. Yes, I'll ask for help to get something down up high, if someone's handy or I might get caught climbing on the counter 😏. When I was recovering from brain surgery , I was willing to let my husband carry out the grocery shopping, mainly because I literally wasn't physically capable of it. And yes, if there is ANYONE else in the house, I will holler for them to come take care of a spider. But do not tell me what to do, or worse, what I can't do.  My husband has learned this the hard way over the years. He's developed a carefu...

 This morning I'm feeling the futility. I try so hard, so hard , to do the right things. I'm trying to be a good steward of the body God has given me and the resources He's provided. I'm trying to listen to all the medical professionals whose advice I've been blessed with. I'm trying to eat right and exercise right and sleep right and wear the right things and do the right things and not do the wrong things.  And still, things seem to be heading downhill. Sometimes I feel like Jack's partner tumbling head over heels down the slope.  It's become a frequent, more-than-daily occurrence. My husband says, "You're falling apart!" followed by something between a chuckle and a guffaw. I am blessed and thankful to report that my husband's empathy and nurturing have increased by leaps and bounds. As a side effect of this, he is noticing more when things are not right with me. He sees when I get a certain look on my face, or it grabs his attention...

  I go six months in between MRIs to check on my brain tumor at this point. You might think that gives me a six month break in the worry, but it doesn't. My husband and I were discussing this in the car today, on the way home from a doctor's appointment of course, and what we decided is that it gives us about two months of, "Boy I'm glad that scan was clear." Followed by two months of, "Well, I'd better not book anything six months out because I don't know what the next scan will show." And finally two months of, "I wonder what the next scan will show? Are my symptoms worse? What will we do if it's worse? What if they say they just can't tell still?"   Living like that is exhausting! Both of us are so over it, but not sure how not to live it. It's not like we're actually caught up in worry. We've really handed things over to God and we trust Him for it, but the wondering has us in pretzels. Do you know what it's ...

  As I mentioned briefly last Wednesday , exercise is an important part of maintaining my blood sugar. According to my doctor and my nutritionist, I need to get some movement in after each time I eat. That's not super easy or practical because I'm a small-meal-every-two-hours person. That would mean I'm taking 7 or 8 walks a day! I wasn't even taking one walk most days before so that's quite a leap! But something is better than nothing, so what can  I do? Walking the Breast Cancer 3-Day in 2007. 60 miles in 3 days!  On our trip over the last week I did try to get out and do a 10-15 minute walk around the resort each time I ate, or I would get out of my wheelchair and push it around town like a walker. I always feel awkward about doing this no matter how long I've been using the chair. It's like I still feel like I have to prove my disability to everyone around me and if I get out of my chair they'll think I'm faking. Well, the truth is they might, bu...