I’m So Much Better, But Not Yet Great

Christmas TreeHello there friends, Merry Christmas!  I love this season, all the music, decorations, bustle and bells.  But in the midst of all of that…many of us are still dealing with the same challenges, perhaps trying to move them to the back burner while we’re cooking up holiday surprises.  I would love to sit here and wax on about the joys of the season…and I promise I will in my next post!  However, today, this post is for those who are “in it with me”. Who know how hard the journey has been, and that it isn’t over yet.  Whether you are facing a challenge today yourself, or if you are just empathizing with me for my sake, thank you, sincerely, for sharing a moment with me here ❤

This morning, I had an appointment with my GP (general practitioner) doctor for 2 reasons. First, I need his authorization every time I need to see a specialist and I am due for a check in with the OBGYN for the large ovarian cyst that they found during my hospital stay.The second reason was for pain management – which is a nicer way to say I was about out of my pain meds and my gastro refuses to write a script, and keeps kicking me to the GP even though he knows the GP hates to dole out narcotics.

Now, a few things are wrong with this whole situation.  First of all, in the past, when I’ve been hospitalized with my Crohn’s, it’s always taken about 6 months to truly get back on my feet – working, exercise, stable emotionally, and off the pain meds.  We are at an even 5 months since I was released from the hospital, but only 3 weeks off the steroids, (by ditching those, I started eating normally, lost weight, less stress, no more bone damage…but lost energy, and have more pain, it can apparently takes months for the body to re-adjust).  I have started Cimzia, the biologic inject-able which will be a long term maitnence dosage, however that can take 3 months to fully kick in before we can asses if it’s even the right treatment for me.  We are 2 months in.

All of that to say, I’m back to some work and exercise, still not sleeping, and all of these things are made easier with a little oxy. Now, I know it’s addictive, I know people have issues with it, and the fact that I need it still is embarrassing at best, and frustrating at worst.  I have, in the past, always been able to wean myself off without any outside help, but it genuinely takes a long time for my body to rebuild it’s strength.  In this case, I have been sick, in pain, not sleeping, battling my Crohn’s and gut infection out of control for a solid year before I was admitted. That means a year of mal-nutrition, muscle depletion, and un-rest, (we won’t even go into the emotional issues and the over all effect of this on our new marriage), from which my body is trying to recover.

DoctorPillsMy gastroenterologist said that it was “annoying” to take a test every 2 years to get certified to dispense pain meds, so he has sent me to several doctors, and even suggested that I just go to the ER when I needed a refill.  The GP I found to work with is so understanding, and was willing to help me, but was upset at being put in that situation, and I don’t blame him!  Also, he is retiring in 2 weeks, so then what?  He ended up filling the scrips, suggesting an anti-depressant to help me sleep, and wished me luck.

I felt awful sitting there in his office.  I was clearly stuck in the middle of these doctors and the state regulation, and felt bad asking the doctor for anything!  In fact, the hubby still doesn’t like the fact that we’ve had to return to western medicine after trying to use purely natural and holistic methods for the last year. However, I had walked in feeling pretty good about the fact that I had been biking and exercising, and gotten myself down to 1/2 a pill a day vs. the 2 full doses a day I was on when I first went to see him.  But to him, he just saw a young woman who looked like she should be well, and didn’t believe I should have been on anything to begin with…and admits that he knows very little about my disease and nothing about the Cimzia I’m taking. He thinks I should get a new gastro, but it was hard enough to find this one who has a pretty good beside manner, and was willing to work at the level of treatment I needed.  There’s the rub my friends.  I wish I could have just one doctor taking care of me, who can see the whole picture, who understands some of the unique factors in my case and the way I’ve dealt with it over the years.  In fact, as I sat there listening to his frustration with silent tears running down my face, all I could think of was that if only he knew how bad it had been, how many doctors had thrown up thier hands and said they couldn’t help me, and how hard I had worked to get back to “good”, and how I wouldn’t be crying if I hadn’t had to drive my husband to work at 3:30 in the morning because the Army is crazy and neither of us got any sleep last night.

As I walked away from his office with 3 scripts in hand, I pondered how there was no way my husband was going to let me use an anti-depressant after what he’d seen his veteran friends go through.  I also thought about how low it feels to “need” something no one wants to give you, even if they agree you need it.  I thought about how I needed to be at my best to straighten out some work stuff today, and probably wouldn’t be because of the sleep deprivation.  At least I’d have some meds to make me more comfortable right?  Nope!  The pharmacy was “out of stock” and won’t be able to fill them for several days.  Sigh.

Here is the deal – the main reason I feel the need for all this medication is because society isn’t made to let us rest.  I can’t take more time to heal, life is moving on and I need to move on with it or get left behind!  I already feel like I’ve missed so much, even lost some friends, let people down, and been forgotten in my hibernation. I want to wake up!  I want it to be summer in my life again!

So what to do?  I don’t know.  The government has made insurance more messy, so we (doctors, nurses, patients), spend a lot of time making phone calls, filing papers, and making less than necessary appointments to meet requirements and at the end of the day, I’m not really any better off than I started. I just feel a little worse about my situation, and really want to move it to that back burner again.

IMG_20141227_175335To end on a positive note…as frustrating and embarrassing and upsetting as all this is…I don’t want to seem ungrateful – because I’m not!  Just yesterday as I rode my new bike in the sunshine I was counting my many blessings.  Any way you slice it, I am so much stronger than I was this time last year, physically, spiritually, and mentally. God has been so good, and stood by me though it all.  I may not understand Him all the time, but I see His hand in the little things…in the beauty of a blue sky, the loyalty of a little dog, the laughter two people share.  When I see these gifts I know it’s true,

“For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.”

I’m so un-worthy, yet I am encouraged – may I complete those good works, and be a blessing to this world before I am called home.  May it be true for you as well.

Much love to you today dear friend, and thank you again for being “in it with me”.  ~ Morgen

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4 Minutes of Focus

Anything worthwhile…worthy, worth doing…takes a little focus. It takes a little effort, and a little decision.

social-media-multi-tasking

I am so in the habit of flying into my thoughts for the day, or a task, and then when it’s not going well, I often just keep barreling through ‘multi-tasking at whim’ when we could vastly IMPROVE what we’re trying to do with just a little focus. For me, it was my favorite soothing music, (literally like one 4-min song), and some improvised breathing/yoga stretches to try and relax my sore back and ham-strings that provided something “worthy” to my day.

In my soreness this morning, even after pain meds, I had tried to just get my hubby to take care of it all for me – make the tea, put food in the oven, etc…but by 7am recruits were blowing up his phone, so I sighed and prayed and forced myself out of bed. Morning chores were rough, and it was Ed who admonished me to stop and stretch out for a minute  as I hobbled from dogs to stove.

If you're movin' you're groovin' honey! Just let it flow...

If you’re movin’ you’re groovin’ honey! Just let it flow…

Just those 4 minutes – I focused on breathing fully, leaning into my stiffness, and enjoying the music, and just shifting whatever whatever I wanted!  Sorry more evolved friends,  “True Yoga” intimidates me. By the time Pandora had switched to the next song I was ready to shmimmy up and with a little shake and feel a smile warm my face as blood flowed and tingled down my spine.  I’m cured!  Kind of, for now.  Just then the kitchen timer alerted me to a hot breakfast waiting – beautiful.

Worth it!  Just a little focus, effort, and decision…now I can relax with my breakfast and hopefully remember this lesson tomorrow.

Happy Tuesday friends!

~Morgen

A Vulnerable Marriage

dark_flowers_by_sivanchen-d349lqlDoesn’t that sound scary?  The idea of a marriage being vulnerable?  It’s such negative word most of the time. I was taught it was never good to be “vulnerable”. In the business world, you never want to be “vulnerable” to your competition. As a single guy, you never want to be “vulnerable” to a girl who might hurt you. As a practical individual, you never want to be financially vulnerable to “losing it all.” Yes, it’s scary to be vulnerable, to be left open to hurt and pain because someone knows “where to stick it to you.”  However, God created us that way, so it must be for a reason.  Is it possible that this great weakness become our great strength?

I’ve been meditating on this word, “vulnerable” lately because I’ve been doing a personal inventory of myself. Over the last 2 years, my goal has been to actually change my life from the inside out. In order to do that, I can’t keep responding to situations the way I did 5 years ago, or even 2 years ago. If I truly have faith that Jesus knew how to live, then I have to trust Him to help me live His way and not my way. That means, I need to do things that are hard, that I didn’t want to do when I was 22. Well my friends, I’m about to be really honest with you, and it’s going to be really hard, but I feel like God’s been showing me how being vulnerable can be a good thing.  So you can stop right here, or bare with me, it’s about to get real!  Dun dun dun…

Most of you know I have Crohn’s disease, some of you know it’s pretty severe, (20 years, 4 surgeries, countless hospital visits) a few of you know it hasn’t really been under control since I ran a marathon in 2010. (Ha, that was a brilliant idea! With no special training or coaching or taking my condition into consideration…smart.)  It turns out my work-aholic, insomniac, more coffee please, I must be independent life-style wasn’t helping get things back under control, so it has been a slow spiral, and since December…it’s been pretty bad. Why do I share all this now? Because now I’m married.  It’s not just me and my mess any more, it’s my husband’s burden too.  Now he has gladly taken it on and says that he knew exactly what he was getting himself into. In our short time together he’s probably done more research on my condition than I have in my life-time. (That doesn’t actually say much, I was never big on spending time on my disease, but its still pretty awesome he’s that committed right?)

wedding rings smallWe are still newly-weds, married less than a year, and you’d expect that first year to be all about decorating the love-nest, cutsie date-nites with other couples, and lots of sex. And it should be!  But that is not what God had in store for me and Ed. In fact, God has taken us so far past those expectations that I’ve completely let them go – and yes, that took many tears and much journalism. In our house, there are no cute pajamas, I don’t cook dinner, my make-up hasn’t been touched in months…(yes Mom, I’m still your daughter!)  Instead, I spend most days in bed with my lap-top, still trying to do a little work, anything to feel like a productive member of society. By God’s Grace, some days I am! But I feel gross, I’m in pain, and I can’t do much to help.  My man takes it like the soldier he is, works all day, then comes home to a sick wife and a messy house.  It breaks my heart…and that is almost worse than the pain.  I want so badly to be the partner and the help I think he deserves, to live our life the way we planned, but God has a different plan.  He has used this pain, my so extremely physical, Ed’s mental and both of us so emotional, to tear down every wall and facade a human can devise. , There is just no room for anything not honest in our marriage. There is no room to not try and know and understand and to forgive and to listen to each other. 

Now, one would think that just managing the sickness would be enough to deal with, but Ed and I are both such strong (stubborn) leader-types that are constantly strategizing, dreaming, reading, planning, and recruiting, that we still have to battle through our conflicting ideas and ideologies sometimes.  We still fervently pray God would use us for something greater than ourselves – even as I feel like this sickness is the most selfish thing in the world. But as we hope and pray and wait, this is what God’s done – He’s made our marriage vulnerable. 

stitched-heart-tattoo-sketchThe other day, I’d just had a really bad bought of the pain, and Ed had literally walked in the door from work to find me sobbing, and so exhausted, I could do nothing as he took me in his arms by cry against his shoulder repeating, “I’m sorry, I”m so sorry Babe!  I’m sorry…”.  He shushed me with, “Baby, don’t you ever apologize to me, you’re fine, it’s ok,” and as he held me and we prayed I realized this – every time your heart is torn,, and lays openly wounded, there is an opportunity to bond with the person your turn to in your healing.  As Ed and I turn to each other with our hearts bleeding every honest thought of who we are, I think God is stitching those wounds…and our hearts…more closely together as one.  Sigh.  Isn’t that a crazy and terrifying and beautiful image?  After all of this, how could our marriage, our relationship, our purpose for living, not be forged together?  

It is a pain I wouldn’t wish on my worst enemy, but if something like this does come your way, pray that God would let you be vulnerable, and then that He would heal you with his surgeons hands. At this moment, I’m not in pain, I’m able to rest, and to be truly grateful for 8 months of a vulnerable marriage.

~ Morgen