My Own Diagnosis I can’t tell you how timely this article is. Or looking back seeing all the weird symptoms that made me feel like maybe the high stress levels over the past few years were finally making me snap after all. Yet, now there is a real medical reason-almost a sigh of relief mixed with a dose of oh snap (to put it lightly). I had a much harder time bouncing back from this summer of taking care of my mom. I even found a free NordicTrack cross trainer I was starting to use to get myself in shape again. Definitely had put on a few pounds. All of my self-care strategies that I’ve developed over the years weren’t quite cutting it. The constant exhaustion, or if it went away & I worked back up to my “normal” pace-it would wipe me out quicker & take longer to bounce back. My ability to retain information & string together details & documentation were taking a hit too-it was like I had a fog in my head. Highly technical meetings/research articles/even stringing together my thoughts into sentences so that I could communicate with teams of people on a technical level- suddenly not registering in my head. Simple conversations- I’d get lost or not remember what was said. Suddenly lost while making plans (this is catastrophic in this household of 5). My brain felt scrambled. September brought about a round of near pneumonia-I spent 3 weeks just resting as Dr. ordered. Even my doc said “Mary I haven’t seen you this sick in a long time, you need to stay off the NordicTrack for now & give your body rest. By the way, the reason your mom is doing so much better is because of the great job you’ve done taking care of her, so you need to do the same for yourself.”

I’m not the one who gets really sick. I’m the one usually putting together care teams for people & being the lead caregiver to my small army- I take care of those who are really sick. In October, I noticed severe water retention, higher heart rate, and then my blood pressure shot up & crashed within hours. The mental cloudiness continued. I noticed it when I was invited to a fundraiser with my old work crew. I couldn’t carry a conversation & things were awkward-I wanted to say it was them, but it was me. I went to Florida to surprise my Dad for his birthday-blessed to have 2 nurses to stay with for a week. They witnessed some of symptoms, confirmed things weren’t just in my head, & made me promise to call the Dr. as soon as I got back home. I did. Still ended up in the ER with a racing heart & BP jump all while reading a book in bed. Cardiac stress test passed. I was told there was something going awry, it would be like solving a puzzle, but it was good I was seeing my primary care doc in a few more days.

I saw my doc. He agreed something was up. Sent me for a lot of bloodwork. Said come back in 2 weeks. I posted that I had 7 vials of blood drawn for a work up. Part 1 of puzzle solving. Normally, my doc’s office calls if anything is off in the results. So, 2 weeks of nothing & I thought “great no news is good news”. I got a cold the Monday before Thanksgiving, had a meeting Tuesday, and by Wednesday a swollen throat-did run out to finish shopping for holiday dinner but all the in between times-I rested, hydrated, & self-cared. By Thanksgiving night I had developed a mouth full of sores, horrible congestion, tight chest, & by Friday was at Urgent Care. With a virus-but another round of prednisone to help with the swelling (again-there’s a theme brewing). My blood work follow up was on the upcoming Monday (3 days) anyway, so I thought the timing was perfect. I was going in to say “hey hey look at my throat & how in the heck did I get another sinus infection, & yes Larry loves my sultry hoarse voice but…. Yes, I brought my blood pressure machine & yes it is still all over the place”. I thought the Dr. would look at my throat, confirm the sinus thing, look at the blood pressure readings, and recommend some more testing. Side note: This is also my family’s doc, so he knows exactly what I’ve been through over the past few years & there is comfort in having him to take care of me plus he’s aware of family medical history.

My appointment didn’t go like I thought it would. I did start it off telling him how weird I felt & asked him to look at my throat. He wanted to tell me about me bloodwork first(no phone call remember). “Your cholesterol is a little elevated (I do not have a gall bladder so that can happen & can be easily fixed), but I’m not too concerned about that at the moment. You are negative for anything heart related persae. Blood sugars are normal. Liver function, kidney function good. BUT, you definitely have an auto-immune something going on. It would explain your joint pain, cysts in your finger & hand, hair falling out, & dry skin. Nails breaking. And now your mouth sores along with dry mouth you’ve been noticing (See, told you I have brain fog-I forgot to mention those other weird symptoms) “Mary you have Sjogren’s Syndrome but yours is a secondary infection. Your primary diagnosis is going to have to be done through a rheumatologist. You do not have Rheumatoid Arthritis according to your blood work though (as if that would be easier than what could be coming). There is something else but it takes years sometimes to diagnose (avg. 4 yrs-string together my cardiac & GI issues & other stuff-I’m in yr.3) & it is difficult at that. There are like 8 different tests and you have to be positive on 5 of them for the confirmed diagnosis. You already have 2 of the 5.” Well considering I have the genetic disposition to boot-added bonus.
I was recommended to go to a practice in Annapolis that is moving closer to here in the coming months. The practice is award winning-all reviews top notch. The problem is I have a 2 month wait. So, me being me, I’ve started researching. The fun part is, I have a partner in crime, who beat me to the research. It was Larry who was the first one of us to start researching-my star advocate apprentice . You know there is a story there-but that is one that well……remains to be seen if it will ever need to be told. We’ve been reading together, telling the kids bit by bit what’s up, already decided to order Christmas dinner from Wegman’s. The counter is full of vitamins, supplements, I’m reading all about anti-inflammatory diets/the Mediterranean diet, & as much as I hate prednisone, I finally started to take it like I was supposed to over a week ago. In my research, I stumbled into a friend 500 ft away that knows a few people with Sjogren’s. I reached out to her. She said the hardest part is the in between of getting the initial diagnosis then coming up with a care plan. She’s not kidding. It is hard. I do not like limbo. I take things head on. Type A personality all the way. Dot I’s cross t’s. Systematic. Have answers. Only mysteries I like are books & movies. Now I have moments that I can’t even think straight & get lost in conversations. Want to start a list & write stuff down to help me remember but can’t remember what it was I wanted to write in the 2 minutes it took me to get my planner. Not my kind of mystery. Don’t even get me started on the fatigue. That was the first thing & is one of the worst. Mrs. Jetsetter is benched (hopefully just temporary).

So, welcome to my newest part of my journey. Always an adventure. And just like my blog states, I’ll continue to look for the simple pleasures & pass them along. Appreciate if you do the same. I already had some sweet little things to share-I just temporarily forgot them as I’m typing. Ha!


Second (Uh Third, Forth, …) Chances

I’m sitting here on a cold, grey, rainy day being absolutely awed by life. Sifting through memories while undertaking a major project of simplifying & organizing. I’m coming across old artwork, letters, & keepsakes. The goal: streamline our household into a smooth oiled-yeah let’s just get this place picked up please-we’re running out of room. Besides, most normal people do not take up this task until the kids have grown and left. But, I know well we are not normal. This project means going through the collection of “stuff” accumulated over 21 years – 21 YEARS?!?! That fact alone is enough to stop me in my tracks.

Tomorrow is our 21st Wedding Anniversary- a fact that has me blown away. Statistically speaking, this was never supposed to last. Honestly, I’ve wondered if we should last more than a time or two over the years.o-DIVORCE-INFOGRAPHIC-900We married young, we were immature (of course we didn’t know that then), we thought we knew what we doing. Babies came, life got complicated hot&fast, and soon we were sailing far off of the island of security, comfort, and sanity.

We’ve been through the Army National Guard stint (it wasn’t just one weekend a month & two weeks a year when your husband was in leadership, the time committment was exponential). Let’s see we’ve been through car accidents&freak accidents-like the one that landed Larry in & out of the hospital, rehabilitation (learning to walk again), and over a year of home health care. All this without health insurance during his career change. Topped off with a newborn, 16.5 month old, tantruming 2 1/2 yr old, and a kindergartener during that year alone. I KNOW STRUGGLE. Happy first 6ish years of marriage.

We’ve been through other serious health problems. In this family, if we get sick, we go all out-no simple little virus or infection for us. We’ve had one hospitalized for MRSA, one with an infection behind removed tonsils that mimicked meningitis & required home IV therapy, infant pneumonia, head trauma (This End Up Furniture was durable; the running toddler’s head was not); rushing to John’s Hopkins in a crisis, stitches, staples, broken bones, heart problems, and digestive problems. Heck we even got sick-all 6 of us-the entire house down with H1N1, or there was the stomach virus of 2000 that ended with having to call in ServePro to clean every carpet, pieces of furniture, and curtains (serious projectile) ’cause little people couldn’t grasp said concept of run to bathroom. We’ve been through nebulizers, hand sanitizers… We had a break for a few years then recently- 2012, a long complicated mono virus that almost took out a spleen & liver, and a kid- resulting in the entire summer of 2013 in & out of the hospital. I semi-cringed when Ebola hit the news. No I fainted really.

Oh goodness. What about job/career changes?? Been there, done that. Both us changed the direction of our careers( & I’m gearing up to do it again {see more a few paragraphs down}). With one of those changes, came one returning to school in a far away state-meaning we lived apart for many months. I lived kind of like a single mom with a preschooler & infant. Then it was onto a degree & umpteen “gold ticket” certifications to land some impressive jobs-just that there is such a thing as too many job changes. Five job changes in 18 mos. Don’t get me wrong-in his field it was a common occurence and each time it was a step up the ladder. I was still a stay at home Mom with 4 kids at this point. But each change brought about yet another change in time commitments and schedules. I haven’t even mentioned what was going on with the kids but that is another story. Then I returned to the work force 8 years ago.

Another big marriage killer: Finances-we had that too…I mean we didn’t have finances. We’ve just about lost everything. I’ve learned to stretch a shoestring budget (thanks to some faithful friend’s teachings) to the point that if I didn’t do my best to cut corners, it came with ugly consequences. We’ve been the recipients of foreclosure & repossession notices along with mounting bills. Talk about a killer. Yet to trump the misery, we’ve also been the recipients of groceries left on our doorstep, holiday meals brought by churches & motorcycle clubs, meals made by friends,family, and co-workers, mysterious checks, a magical mailbox, a hand me down vehicle or two… Once a box of cheer (literally a Cheer laundry detergent box filled with chocolate candy, mints, a scented candle, bubble bath, Tylenol, hand cream, a handwritten thoughtful note-it was a personalized box of encouragement sent to a despairing young mommy from another young mommy at the time). We’ve received notes, letters, cards of encouragement or just funny cards that made us laugh instead of cry…..we’ve had some great people in our lives, for long or short times. We’ve lost some pretty incredible people too. Relationships have been drained, strained, left, lost, found, and new friends and family have entered. We’ve been blessed to have some pretty great neighbors too, having a big loud family means your neighbors could make or break you! We’ve been made better by our neighbors.

We’ve been through unemployment more than once. Most recently was last year. Just when you think we can’t take anymore, or we’ve paid enough dues, the crazy came all over again. It was a long hard painful time. The kids were old enough to understand/pick up on things without us saying anything- despite the effort to sheild them from the seriousness- which made it difficult. The stress took a toll on them too. We were going off like a bunch of Poprocks…no, more like Mentos in Diet Coke. Additionally, in between the mono outbreak of 2012-2013 and this recent unemployment, I was offered a scholarship & had been accepted into two different colleges. I was suppossed to finally finish with that college degree from so long ago. Yet, I had to give up both the scholarship & my place in the college program.

Another killer of marriage: the art of making each other miserable. We made this an art for quite a few years. Our tongues are so sharp that we decimated each other more times than I care to re-call. Our attempts to help each other have backfired a time or two. Here’s a humorous example: after witnessing one spouse not standing up for themselves in other situations & on more than a few occasions, one encouraged the other to “call an ace an ace and a spade a spade”. “Just speak up and say something-just stick to the facts”. I think the “encourager” could be regretting that teaching. Now since the encouragee has learned ace/ace to spade/spade like a pro…well it has been a helpful skill when the need for advocating has come up.

Surprisingly, we haven’t had substance or alcohol abuse-that is really amazing to me. We’re prime candidates, in fact we’d be poster worthy for every reason one would drink or abuse drugs. I mean there may have been an evening or so along the way, that the quota for what we should have consumed in a healthy way, was liberated to regurgitation, I mean days regretting such foolishness. Yet, that liberation hasn’t happened often.

But the story doesn’t end here. There is so much more I could write about. I could probably write a series of books…but here’s the clencher: We have defied every statistic. We’ve grown through all of this. We’re no longer the same, not even the same people as a last year. Through each of these many circumstances we’ve gained strength, insight, compassion, and honesty. We’ve been humbled. We’ve been torn down and rebuilt. We’ve learned (ALBEIT PAINFULLY SLOW). We’ve learned to view life through a different lense, we’ve learned perspective, we’ve learned to laugh, we’ve learned what really counts, and we’ve learned to not sweat the small stuff. Well, one of us is still working on that small stuff… We’ve learned what a little mustard seed of faith can do. Most importantly, we’ve learned committment (although there were times we could’ve been committed;) and that is the bottom line. The fires of our marriage have been brought to a mere smolder more than once, yet miraculously the smoldering ash pile has re-ignited more than once. That, dear readers, is what love looks like. Love isn’t a feeling-it is a committment. It has it’s ebbs and flows. Up and downs. High and lows (yes it feels like it gets really low too). Love takes time to grow. The longer you let it grow, the deeper the roots go. We’ve arrived to the eve of 21 years, and I’m still amazed.

Oh and the Second,(Third, Forth…)Chance title…opportunities that were sacrificed for the sake of the family seem to come around again. I’ve returned home, I “retired” from the school system 6 months ago. The kids (3 teens & a twenty) have calmed greatly. One changed schools again, yet the evidence of maturity & growth for all four is showing -although we have our days ;). Financial struggles are still very real (especially since I left the workforce & gave up the best health insurance). In fact just last week, I wondered if we really had made a good decision for me to come back home. We still have awhile to go before we financially recover from last year. Who knows? I don’t have a crystal ball or a vending machine- so I can pick what does or does not happen. Then, I got a text message “I had to go to the principle’s office (crap here we go again I thought as I braced for the next text). “Mom, I’m part of the fabulous 50’s-I’m in a group of the top 50 students school wide that doesn’t have low grades or behavior issues-Mom I did it!!!” Yes, sweatheart you did and we’re all doing it now. I was nominated (again) for the scholarship I gave up two years ago. I’ve been offered a chance to do some family training-no longer an attendee, but a presenter after I finish with my little scholarship opportunity. I was worried that maybe now still wasn’t a good time. As I talked to my family, their excitment for me validated that maybe this is time. As I talked with some other professionals, their excitement seemed to be more than mine. I’m still in a “probation” period where I am gathering letters of recommendations and having to prove that I am committed (here comes that word again-just don’t let me get committed). We’re not quite in the clear yet, but when measured by what marriage and family really means- we’re getting there. WE ARE 21 (again) 🙂

The Magic Mailbox

It has been just over a year since I’ve sat to blog.  So many things going on and not enough time to gather my thoughts in any sensible way.  Shifting on the fly with intensity.  It’s becoming the new norm.

Last night I woke up in the middle of the night.  This happens from time to time.  My mind was riddled with what to do’s, what if’s, and all the things that I have no control over to begin with- much less in the middle of the night.  I’ve been down this road before-so I can be thankful that I can look back on lessons that were learned.  I quickly reminded myself that all the companies I could be contacting are closed.  Everything will have to wait. Worrying at 2 am is not sensible. I eventually fell asleep around 3:30.

You would think when my alarm went off at 5 am, I would say that is not a sensible time to worry either-especially with the gift of a surprise “weather-related” day off.  Ha-instead all the details came flooding into my brain.  All of my worries, insecurities, and anxiety.  So with an early start, coffee percolating, and some quiet think time, I began to ponder&attempt to coherently think things through- more like pray things through.  Each worry. Each mistake. Each detail. Mornings have been the hardest time for me lately.

For those of you that have known me for a long time, you may remember stories of the magic mailbox.  We’ve been through hardships before and we used to get amazing things in that mailbox.  When we were struggling with finances years ago, we prayed for God to sustain us with what we needed.   I went to the mailbox (I think in the same week we had prayed) and there was a letter from a title settlement company.  The letter stated that after an audit, the company had charged us too much money.  There was a check enclosed. Umm, we had settled on our house 4 years prior;) I still have the letter & check statement pinned to the bulletin board at our desk.  That just one of the times-there have been others that came in the mailbox at just the right time and always never expected…. but it has been a few years now.  I was always amazed & humbled. 

So now entering the 6th month of struggling with job placement for my man (he’s accredited, degreed {making up my own word}, and holds certifications that are hard to get in his field), I found myself starting to panic.  Of course repossession letters are coming and creditors call many times daily-none of that is surprising.  I’ve come to expect that.  After all we’ve used everything we had.  

Pondering thoughts led me back to the mailbox and telling God how much I missed those moments. How much I missed stability.  How much I missed being confident in our budget. How much I missed just being able to do something small. Then I remembered how much I have learned through hardship-lessons that are worth more weight that any precious stone or gold.  Lessons that change the way you look at life.  Lessons that compel you to keep going the distance despite the present circumstances……..Learning that I am really rich :)(just not in money).

I went to the mailbox today……inside was a card from a far away person, who out of the blue wrote how they’d been thinking of us….and enclosed a check.  Oh hello God-you are always there!!!!!Image 

Opportunity of a Lifetime

“Faith is taking the first step when you can’t see the whole staircase”~ MLK

“Regardless of what we go through in life, there is always purpose wrapped within the pain. It all boils down to this~every triumph and tragedy in my life has served as preparation to stand firm in the moment to take what many perceive as an unbearable circumstance and impact the lives of others”~ OJ Brigance

Two quotes that just happened to cross my path in preparation for a phone call I didn’t quite know was coming. I have been continuing to advocate for better services and care for my family. This is now my third and most challenging case. Am I a social worker? Not technically. Am I a therapist? Not technically. Am I a case manager? Not technically. Nope, I am a mother. I have learned a few things through the years in hopes of helping others-but never anything official…until a chance phone call & meeting.

In an ongoing effort to have appropriate care for my son, I found myself sitting at a round table with every county agency involved in mental health care. I was there because it took pouring out of myself and going out on a limb to get my voice heard. I can’t say I was the least bit comfortable but within me there was a burning fire that I could not quench. A determination to see that my family would be able to access the specialized resources we desperately need.

Then an opportunity came-an advocacy agency (also at this round table) wanted to put me through training to be able to better advocate, not only for my family, but for others in need. “When the dust settles, let us know.” That burning fire within me grew. I went home to talk to my husband, then my father, then a few close friends that have supported&encouraged me over the past few years. Everyone said go for it!! I let a few weeks pass, then the latest gun control debate pushed me over the edge. The policy makers are not treating the root of the problem-the state of mental health care (better put the lack of it).

The issue-taking a risk. I have been forewarned that the training is intense. The training is provided on the weekends, but I have to travel&stay overnight (Friday evening to Saturday late afternoon)-the advocacy agency has offered to sponsor me, including paying for the hotel&meals. I will be given a huge binder&flash drive. I will have homework. The risk-I am still working full time, still running a household, still advocating for my own,….I already have a full plate. But to have come this far….

This is the second chance I’ve had at this. But never on this big of a level. How can I let this pass when it has been my passion to see those in need have access to the resources&help to better their lives? More&more people have come across my path that either don’t know where to begin or what questions to ask. The burning fire will not stop.

So, tomorrow I send off my formal application. Oh, that phone call-was the President of the program (State level) calling to say she had heard about me (on the county level)&was hoping that I would apply for the program.

My simple treasure is an igniting passion to no longer talk about change but an opportunity to be a voice for change brought about by circumstances that I thought would bring me to my knees….and it did…but not for long 😉

Is This For Real? July 2012

Found this draft of a post from back in July.  Somehow it  never was published.  Better late than never…..

Pinch me. No-never mind don’t do that. This is real. I really am sitting here, finally having the time to think. A time to relax and ponder the events over the past few weeks. A time where there isn’t a crisis of some sort that needs not only my immediate attention, but requires every bit of me to keep going. How sweet is this time!!

If you have been following my blog, then you know I am a mother of 3 special needs sons {youngest11 1/2, & a few weeks away from one turning13 and the oldest turning18, and a husband turning…:)all three birthdays within 4 days-eh gads!}&one precious daughter about to start high school. My life is anything but ordinary!!

We’ve had another hospitalization yet I have been fortunate to learn from previous experiences how to better navigate through it all.  We finally made it to John’s Hopkins!! I’ve learned to drive through the city and back all by myself. I’ve learned to keep excellent records, I’ve learned to keep composure, and how to advocate on many fronts for my children and our family.

The sweet treasure-learning. Being a life long learner. Learning to never give up!  And the sweetest of all is having people in my life who have taken the time to teach me

Beauty in the Ashes

“We all want things to stay the same. Settle for living in misery because we’re afraid of change, of things crumbling to ruins. Then I looked at around to this place, at the chaos it has endured – the way it has been adapted, burned, pillaged and found a way to build itself back up again. And I was reassured,……Ruin is a gift. Ruin is the road to transformation.”

So timely- one of my favorite movies on the TV, with a quote that brings a fresh breath of relief and steadies my anxious heart.  My simple treasure, as I look around at circumstances which are beyond my control& beyond anything I could’ve ever imagined they would be,  is the simple fact that all is not really lost.  To each and every season of life there is a purpose and a plan for it-even though I may never understand, I can rest assured confidently knowing that nothing happens haphazardly.  That doesn’t mean my heart isn’t feeling pulverized and aches.  It just means  I may not be able to see the reason for ruin now, but I know I will be able to look back in time and see the beauty in the ashes.

I’m watching many friends & family post about what they are thankful for.  Each day the goal is to think of one thing you are thankful as we are leading up to Thanksgiving.  I love that I can’t my finger on one thing I am thankful for today-as I ponder through it I can’t pick just one thing.  I am blessed to have a long list of things I am thankful for in the midst of such difficult times 🙂 My simple treasure-finding beauty in the ashes 🙂 To look at what appears to be a heap of ruin and ashes, yet know with fresh grace, that all is not lost.

Going Home

I sit here feeling a host of mixed emotions.  I’m tired, sad, heavy hearted, thankful, in awe of life, etc…grieving.  The past week we’ve all sat on edge wondering when her time would come. We each took turns sitting with her, sharing meals as a family, and comforting her and each other. Some family took long turns-gave up sleep to care for her around the clock.  Me? I was in between full time work, doctors appointments that we’ve waited for months to get, and still keeping my little family going at the same time. I was blessed to go when I could-I knew my grandmother wanted me to take care of her great grandbabies first.

I had talked to my dad earlier in the morning.  We knew we were down to hours.  I knew I still had to take care of things here so said I would come over in a bit.  We hastily worked to get what had to be done finished.  Larry & I were also juggling our emotions along with making sure we were helping the kids process what was happening.  The phone rang and it was a quick family meeting-we were not going to force the kids to go but gave each a choice-that also meant Larry would have to stay behind. Emily & I sprang to the car.  We were going down the I95 ramp but it was too late-traffic was stopped.  I wasn’t so upset that I would not make it for the final breath in as much as I just didn’t want to be trapped in traffic.  I called Larry, asked him to pray, and hung up the phone.  No sooner, cars started moving and when we got to the exit ramp-the road was clear for miles.

I had also been trying to get a hold of my mother.  Even though she and dad had divorced decades ago-my mother stayed close with the family.  She had been best friends with my Aunt Rita since high school.  The closeness is still a testimony to how my Grandmother impacted so many lives.  Granny was a second mother to my mom from the time she was a teenager on throughout her life.  The problem-I can’t reach Mom.

Em & I made it. We walked through the door & the first one to meet me-Mom:) Whew-“God is good”I think to myself quickly yet  rush past her to Granny’s room.  Her bed is encircled by family.  They part to allow me to get to my dad who is standing by Granny’s head. “She just past but she can still hear you”. I’m alright with her going. I had the sweetest chance to kiss her cheek and whisper “I love you” one more time.

The room has the greatest sense of peace. I take a moment to glance around.  The wall has wonderful family pictures spanning generations. I look around at everyone in the room.  “When you have to go, this is the way to do it-surrounded by those who love you dearly.” Next thing I know we each have a turn to say what we’re thankful for in that moment.  The tears are little as there is more of a sense of awe.  To think this was just a southern grown girl, who has had a huge impact on many many lives.  She was our anchor-the one person who stayed consistent in our life.  Growing up and still to this day-she’s has had all kinds of people stop by just to check on her-former bus riders (she drove a schoolbus when I was little), former teenagers (some in their 60’s now)that used to hang out at her house, etc. Fourth of July was always a reunion and she was known to many as “Mom” or “Granny” (Ethel for one person:) ).

Her real name: Inez Marguerite. Alright-that is how I spell Marguerite-at least on Emily’s birth certificate.  Both my cousin and I named our daughters in tribute to my grandmother 🙂 I think we both saw a strong woman and a legacy we wanted to continue. That is a sweet treasure-even though Granny is gone from this life-she continues to live in our children, our memories and our heart.  That is the sweetest treasure of all!! Thank you Granny. I LOVE YOU!!!