Monday, October 13, 2014

Rough Times

I started this blog post a few days ago, but couldn't figure out how to put what I wanted to say into words on "paper." If you read my last post, you know I had been having a rough couple of weeks with multiple ER visits. That all came to a climax last Saturday and I was admitted to the hospital for most of last week. The post I started was going to be about my experience in this hospital...but I couldn't seem to get it right.

Every time I started writing I couldn't find the right words to express my thoughts or feelings related to my experiences in the hospital. It was not a pleasant experience, and I was discharged with little to no resolution to the problems that sent me in to the ER in the first place. But I am HOME and incredibly grateful for that. But like I said, the more I tried to write a post about being in the hospital, I couldn't come up with the words to express what I wanted to say. It's been a few days, and I feel like the reason I wasn't able to write anything earlier was because there is something more important I want to blog about. 

While I was in the hospital, my mom and I listened to a sermon by Mike Meyers from Reston Bible Church called Black Water. He spoke about his experience working as a diver in pitch black water with only the voice of his tender in his ear guiding him. He used that as a parallel to our lives with the really tough times and suffering we experience being our "black water" and us having to rely on God as our tender to guide us through when we can't see.

Increasingly over the past few months, my health issues have been black water for me and my family. I like to think of myself as a positive person, but lately seeing the good in the midst of the trials has been a challenge. I do believe that I will be healed because God promises that, but that doesn't necessarily mean that it will be in this life. I have a hope for eternity which is good, but when the black water closes in here, sometimes the darkness feels overwhelming. And sometimes, while I'm surrounded by the black water, I just can't seem to hear the tender's voice...

So what? I can't hear God, and you know what, sometimes when I'm feeling especially overwhelmed, I don't even know how or what to pray. Do I pray for healing knowing God has already promised it? Will my asking change His mind for when He will take away my health issues? Should I even be praying for healing? Maybe God is using my struggles to make a different for eternity in the lives of people I come in contact with...if that's the case, I don't want to miss out on how God is going to use or what do I pray for??? 

Sometimes all I can do is close my eyes to keep the tears from escaping and say "Please, God" even though I don't feel like I'm getting any response at all. Please what? I don't know, but hopefully God does.

So what's my point with all this? I feel like I don't hear the tender and I'm wandering lost and alone in the black water. But, I'm not alone and even though it might feel like an eternity, God IS STILL THERE, HE IS STILL GOOD, AND HE STILL LOVES ME. That's all I have to hold on to, and you know what?? DAYENU! At Passover every year, we have a Seder. One part is going through and saying Dayenu after each small blessing and deliverance God gave to the Israelites as they were leaving Egypt. Dayenu means "it should have been enough." So we are declaring that God doesn't owe us anything, and every small victory/deliverance He gives us beyond salvation is an incredible blessing. If I am never healed, Dayenu, because God has already given me more than I could ever deserve.

That being said, I was in a really rough spot just a few days ago. Physically I was still feeling the effects of being in the hospital, but mentally and spiritually I was really struggling. I was on the phone with my mom for a while and at one point I told her that I knew I had physical issues that need to be met, but at that moment, I desperately just needed some encouragement. I had no idea what type of encouragement or how it should look, but all I knew was that I felt like I was in a downward spiral and needed someone to reach out and grab my hand to get me out.

And God is so good in spite of my mess. Nothing changed in my life, I still felt like I couldn't pray, didn't know how to approach God or what to say, but later that day, God gave me the encouragement I needed. I was running a few errands and ended up switching the order I was going to do them in at the last minute. I was purchasing some gift cards from a local restaurant for some friends of ours and while I was waiting, my pastor and his wife walked in to have lunch. It was those few moments while I was talking with them that I felt like I heard the static of the tender’s connection in my ear. My circumstances didn’t change, I didn’t all of a sudden see the light breaking through the black water, I wasn’t miraculously delivered, but I did get reminder of the hope that He is there and I’m not alone. It wasn’t much, I might not have actually heard the tender’s voice in the black water, but the static of that connection reminded me that He is there and is keeping His eye on me even if I can’t see anything.

So that’s where I’m at now. Physically things are still pretty rough, and I’m at my wits end. I have another appointment with my GI in Pittsburgh in a week and a half, and I’m just trying to get there. I’ve been trying a couple new medications one of which I have to call him about because I’m getting some side effects that I cannot function with. The other one I’m not sure is working…so we are waiting for this next appointment to get here and hopefully we will be able to get some resolution at that point.

To finish off this blog post, here is a funny facebook post I saw the other day that I thought was fitting:

“On particularly rough days when I’m sure I can’t possibly endure, I like to remind myself that my track record for getting through bad days so far is 100%, and that’s pretty good.”

Friday, October 3, 2014

UPs and DOWNs

Okay so more like an UP a bunch of DOWNs and another UP. Hopefully I won't have too many more downs in the near future because I'm seriously getting worn out!

So what's been going on in my life?? Well, here is the first UP...I'M MARRIED!!! Woot woot!!!!

I think I posted on a previous post that I was getting married in September, and now it's happened!! It was a great day (minus the hurricane force winds...) and it's been fun to be married! So far so good, despite the crazy first two weeks we have had as a married couple...

And that bring me to the DOWNs...apparently we are taking the "in sickness and in health" part of our vows literally...I had been struggling quite a bit with my gastroparesis symptoms leading up to the wedding. Thankfully the wedding and our 2 day honeymoon went great!!! No major issues and we were able to just enjoy a few days away together. Unfortunately, our first day home (last Wednesday) ended very badly. I had been on an almost completely liquid diet before the wedding because solid were causing me so much trouble. However, a friend of ours who made cupcakes for the wedding had made a special batch with "Kylene safe" ingredients. I didn't eat any at the wedding but she had sent them home with us and we had them in our refrigerator. I broke down Wednesday morning and decided to try one of them...I had HALF the cupcake and even that little bit did NOT sit well. I was so nauseas, in so much pain...I was curled up on the couch in the fetal position just praying for it to pass. I ended up calling my husband (of 3 days) and he made the decision to come home from his first day back at work and take me to the ER. Long story short, it was a good visit and we found out a few things that night that were very helpful:

1) I am SERIOUSLY sensitive to morphine. I always knew I was sensitive to medications, but even half of the adult dose made me close to unresponsive...later in the week doctors were amazed that a quarter of a normal adult dose was enough for me.

2) Zofran (which used to be my go-to medication for nausea) is not really working anymore, at least when things are really bad. Twice I had to ask for phenergan to just take the edge off my nausea.

3) I was seriously backed up! The most solid food I had eaten in over a week was the half a cupcake, but when they x-rayed my stomach, my entire bowels and colon were full. They sent me home with a prescription for magnesium citrate and said that should clean things out.

So that was the first visit on Wednesday of last week. The relief lasted about 2 days. By Friday afternoon, things started going downhill again...up until last week I had been pureeing vegetables to try to get nutrition while not being able to eat much solids...well that backfired and we ended up back in the ER Friday night. This time the doctors did a CT scan which showed a seriously distended stomach and upper intestines. They were concerned about a possible obstruction and we had a consult with the surgeon on call, and suggested admitting me for monitoring, but we decided that wasn't the best option for me at the time and came home. I got another prescription for magnesium citrate (my favorite...) which at least gave me something to do the next day =P

The weekend was okay despite taking the mag citrate on Saturday and being grounded =P Monday we had evening plans, but later in the afternoon I felt things coming back again...ER trip #3 on the week =\ At this point I had all the nausea meds I needed (including phenergan) but I was so nauseas I wasn't able to take anything by mouth. So back we went for more IV meds. I managed to make it to Thursday which brings me to the next UP.

I had an appointment with a GI specialist at UPMC in Pittsburgh on Thursday which I had really been anxious about. I've had some back experiences with doctors up until this point, and definitely get "white coat syndrome" when I meet a new doctor. I saw Dr. David Levinthal, and I HIGHLY r

ecommend him! He spent about an hour and a half with me and was very thorough. One good thing about the ER visits from earlier in the week (thank you hubby =P) was that we had current imaging to show him. Dr. Levinthal was able to look at the CT scan and show us how full and distended my stomach was and the distention in the upper part of my intestines. He was definitely very knowledgeable and really seemed to care (which is a really important piece of the puzzle for me). I didn't feel like just another patient but that he would actually be involved in my care and helping me manage things. Unfortunately there really isn't a quick fix with things like this...we are trying a couple new medications and I have a consult with a dietician who specializes in gastroparesis and food allergies. Hopefully this will help us start moving forward!

So yesterday's appointment was really good, but unfortunately today's work week appears to be ending on yet another DOWN. I help out with a Fellowship of Christian Athletes group at a local high school on Friday mornings, and right at the end of the meeting this morning I passed out. =\ Usually I can feel when I'm getting toward that - I get dizzy/lightheaded/shakey/etc. and can sit or lie down before I actually pass out. Today it came on suddenly. My vision started going black and the next thing I remember is waking up on the floor. Thankfully I was able to recover (at least enough to convince the EMTs and teachers) so I could drive home, but it really threw me off. Whenever I pass out I always end up kinda shakey and feeling off for the rest of the day, so that's how today has been.

Hopefully I'm on the road to another UP since I've definitely had my share of DOWNs in the past two weeks. But that being said, I am so thankful for these first few weeks being married and my amazing husband!! Shout out to my amazing husband who truly has jumped right into marriage and embraced the "in sickness and in health." Hopefully the next few weeks are WAY less eventful than these first two =)