When Everyone But You Are Thankful

I don't know that I have ever experienced that feeling before.  Everyone else is excited and thankful but I wasn't.  That's a crazy feeling.  Yesterday, Zine was released from the hospital to come home.  The doctors and physical therapist have put the fear in us about what happens if Zine falls!!  We have gone over changes we need to make.  And we are in the process of making some changes.  It just takes awhile to get those done!  So in the meantime, we must be very careful of falls!

Yesterday, when he was released, my Facebook exploded with sentiments of gratefulness and thanks. I got text messages saying I'm so glad you're going home!  I'm so glad you are home!!

And I felt guilty for not being thankful and excited. Don't get me wrong, I wanted to be home and lay down in my bed.  A hospital recliner is not that awesome...if you try to turn over watch out because invariably I found myself sitting upright everytime I tried to roll over!  However, at the hospital there were other people there.  Zine was in bed for the most part.  There were people there if I had a question.  Zine was not trying to make unwise choices because he couldn't do much there.  Now, I'm bringing him home and everyone is excited but me.  Talk about feeling alone??!!

I went to pharmacy to get new meds after bringing him home.  And I made the pharmacy staff all cry.  They know me on first name basis there.  And even with them, I very openly shared how guilty I felt about coming home and not being excited.  And yes, the tears rolled.  They most definitely have never seen me cry!  But they did yesterday!  But the pharmacist looked at me and said, Karen I get it!  I understand!  And she assured me that she thought she would be the same way!!  That made me feel a bit better.  But...I really don't know that I've ever had something where everyone was excited besides me.  That might have been a first for me!

My husband told someone tonight that he's seen me cry more this week than he has in 21 years of marriage.   And I foresee another emotion filled week in my future next week!!  I think I counted 9 doctors appointments for my family this coming week.   If tears are healing, then I should well be on my way to healing!!!  And God has definitely had to get a larger bottle to hold these tears this week!

This week has forever changed me!!  I have been to places that no wife ever wants to go.  There are things that I haven't even managed to put voice to yet.  And I don't know that I will ever be able to do that.  But I know I have learned some things...God's grace is most definitely sufficient and His strength is made perfect in my weakness.  And I have experienced the love of our family like never before. And most of that had to do with my willingness to freely receive!  For the first time ever, I have not felt guilty about people taking care of my family and doing things at my house.  I never once begrudged the fact that people were loving us!  I'm sorry I had to get to the depths of despair as I did before I could freely accept love from others!!  I've also shared my life with others like never before! It's amazing what God can do in our lives when we are literally at the end of our rope! Thank goodness, when I reached the end of my rope this week that Jesus was there!!

Still a dream...it can't be real!

Zine has improved.  He is alert and awake most of the time.    He feels fine.  No headache or anything like that.  His blood has been contrary.  We hit the therapeutic dose on Tuesday afternoon which they said was really good.  That means he got to go longer than 6 hours without them testing his blood.  But then Wednesday morning early his blood was thicker and clotting factor was up.  So all day yesterday we spent increasing his heparin drip and giving him a bolus dose twice.  Last night they finally had his blood back in a good range.  It continued through the night and this morning it is still good.   So they are going to let him go all day without checking and see how it makes it on a longer time period. Hoping that it will stay where it needs to!

Physical Therapy came yesterday and helped him get up and move a little bit.  He also got up twice and sat in the chair.  He is very weak!  And I'm sure it will take time to build back up his strength!

We have been battling some emotional issues in our lives and this event has really brought them to the forefront.  We have let this disease get ahead of us due to the emotional issues.  We have not made the needed transitions to proper medical equipment for several reasons.  One, he has fought this disease tooth and nail and to get medical equipment or to do things differently is defeat.  Two, no one wants to turn their house into a hospital!  Three, it is expensive.  But I have definitely realized that we have allowed him to miss out on life due to lack of proper medical equipment.  So we have not only a long battle of emotional issues, we've got a long battle to explore exactly what we need.

And if there is one thing we know about Zine, he is a do it yourself guy!   And we have allowed him to rule the roost and do it himself even when it is unsafe.  He's tried to take his wheelchair down stairs (oops that one was on accident), he tries new things when no one is around and ends up in places he wasn't planning on, getting in the bed is a dangerous event in which I've let him do just because I didn't want to fight him.  Even putting on his socks and shoes is dangerous and on any given day he might nearly fall three or four times in that process.  Even as he has walked with his walker in the house he has become very unstable.  And...I have allowed him to do things that were unsafe because that was easier than battling.  I figured that all the harping in the world wouldn't change anything.

So here we find ourselves in a new situation...a simple fall could be exceptionally dangerous.  As a matter of fact, now if he takes a fall we are supposed to immediately come to the ER. Falls are quite normal part of his life.   Doctor and Physical Therapist have been talking strongly to us about safety.  Which safety means LOTS of changes on our side.  So we will begin the exploring stages of what we need to begin to implement.  And we can't do that on our own.  So help is on the way!!  But the harder part of this is our willingness to step out of our comfort zone.  Removing the comfort zone for not wanting our house to look like a hospital.  Removing the comfort zone of doing things that are unsafe because it is easier.  Removing the comfort zone of being a do it yourself person.  Removing the comfort zone of not knowing exactly how much things are going to cost but doing them because they are things that have the potential to breathe life back into our lives.  Those things my friends are hard and difficult!  And they are choices we have to make.  Not only those choices but also choices in our emotional world as well.

Wow!  There's a lot to take in and think about.  Not to mention the sheer thought that he almost died and the emotional toll that takes.    Can I just say that this all seems like a dream?  I'm pretty sure that we are going to wake up and it will be gone!  But dog gone it, we keep getting woke up at 4 am for bloodwork and it is stark reminder that it is not a dream!  But real often, I look at what has happened and what is ahead of us and I think it is a dream! If only....it were a dream that would be awesome!

Nightmare in Real Life

If we have ever lived a nightmare...it has been since Sunday at 5:30.  At noon, Zine arrived home from church and said I feel horrid.  Please fix me something to drink.  Maybe I'm dehydrated!  I gave him lots of glasses of water and lemonade.  Fixed him some lunch.  He went to sleep and three and half hours later he woke up.  He got up, rolled himself to the bathroom, and then came back to where I was.  Once again, he looked at me and said, Karen, I feel horrid!!  So I began to question what he was feeling and took his fever and blood pressure.  I quickly discovered his heart rate was high.  Got my Cancer Center paperwork to see what needed to be done.  Followed my instructions and called the oncologist answering service.  Within 4 minutes, the doctor called me back.  Asked me lots of questions and recommended a trip to the ER with Zine.  He told me on the phone he was worried Zine had a blood clot.  I thought he was wrong!!

We arrived at the hospital, waited just a few minutes to get into triage and then we were placed first for the next room that was available in about 3 minutes!  From that point on, it was CRAZY!!

Details are all mixed up in my head so I might not get them in right order.  But there was lots of blood work, chest X-rays, ultrasounds, and all those were done what seemed to be very quick!  Then the doctor returns and tells us they need to do a CAT scan.  There was a test called the d dimer test that was EXCEPTIONALLY elevated and that was indeed indicators for blood clots.  So immediately almost they took him to CAT scan.  And within minutes of returning Zine to the room the doctor reappeared.  Much faster than any doctor ever reappears at the ER!!  This time she pulls up the stool and sits down.  I've decided that's a bad sign!!  She proceeds to tell us that Zine has  multiple blood clots in his lungs.  They are moving him to ICU.  The question was she didn't know if they would keep him here.  He may have to be transferred to Huntsville.  I beg to stay in Madison!  She said she had to call the ICU doctor and see if they would be comfortable with him staying here.  Thankfully, he said Zine could stay here!

The next minutes were absolutely horrid.   I asked questions and the dr looked at me and said this is a matter of life and death.  We will not worry about future things.  I remember people coming.   I remember my son falling into my arms trying to be strong for his mama!  I remember coming up to ICU.  I remember I felt VERY loved by our friends!!

Now you would think if life is a matter of life and death the person would be non responsive.  Oh no, Zine was talking even on his possible deathbed.  He is rolling to ICU and I'm not sure what he's saying but he's making people laugh and his mouth is going!

About 3:00 things settled down.  Visitors were all gone.  It was me, him, and our nurse!  About 4ish, I watched as I was pretty certain my husband was about to leave this world.  When his vitals became not nearly as stable and his respirations went down to 3 I was pretty certain the end was near.  But God had different plans!  I am totally confident that God sustained his life that night!

What we know now, is that the doctors have NEVER seen someone with lungs like his alive!  We know that in the medical world multiple means too many to count!!  It means his lungs are FULL of clots.  We know that when clots enter the lungs that they typically think they've found a home and they stay there.  The amazing thing is over the past month or so he's been developing blood clots and they've been traveling from his legs to his lungs and no where else!!  A miracle for sure!   I'm totally confident chemo saved his life in an unimagineable way.  If he had not just had chemo I would have never taken him to the ER.  Only because he had chemo and I thought his blood counts were low did I call!  Zine asked the doctor if I had not made him come to the hospital, would he have died?  The doctor said most definitely! We know that we can look back at little details and are confirmed over and over again that we were in a very serious situation and confident that we received a miracle.  Not the one we have been praying for but most definitely understand that God does still work miracles!

As of this morning, we have a plan in place.  Now 5 more days here sounds like a daunting task...but we can do it!  But even going home is going to be hard because we seriously have to look at how we do life in a safer way than we have been doing it!!  But I'm sure there will be grace for those moments as well.

I would love to say that we are fine and wonderful!  But we would still LOVE for this cup of MS to pass away from us!  I am still emotional and so is Zine I just show mine more than he shows his!  We are still overwhelmed feeling.

Not the most favorite picture I've ever seen of us!  But exceptionally grateful that this guy is here and he was even willing to take a picture!!!

Broken Promise and the Hand

What happens when someone makes a promise and then they break their promise?  Well, I feel anger, frustration, that I'm not important, disrespected, unloved, etc.  And sometimes, I'm just not very forgiving!  That happened yesterday to me!  And those feelings crept right up in my heart with a vengeance!  I've struggled all night and all day with those negative emotions.    And once again I found myself saying...really God??   Sometimes God's plan and mine...well...let's just say...His plan doesn't always look like I want it to!! 

Today, I have been with my sweet girl at the hospital all day!!   Yep focusing on her and dealing with negative emotions...not a fun day for me!  But...my girl has been such a trooper.  She had a surgery in May and again in August!!  That's crazy!!!  But she is a warrior!!!  She just keeps on keeping on!!  She inspires me regularly.  Sometimes she exhausts me!!  

As I have sat with her today, I have laughed, I have cried, and God has spoken!   In hospital settings, Chloe's anxiety goes through the roof!  It escalades greatly!  So this time, we were prepared for that anxiety!!  And it was much better medical intervention than May!  From the moment she got up, her little body started shaking and the tears started rolling.  She was a basket case.  Once we got through registration, the wait was very short.  The nurses were super sweet and efficient.  Her blood pressure was elevated.  I thought it wasn't bad.  The nurses disagreed.  I told them I had seen it worse!  It didn't take long at all for them to get her some anxiety medicine.  Then this girl got happy!  Really happy!  She didn't say much she just smiled and smiled and smiled!  I don't think I've ever seen her that happy!!!  But in the middle of this she started doing this thing with her hand.  I was sitting beside her and she kept raising her hand up in my face!  We couldn't figure out any purpose.  But it was almost nonstop.  Once again, we waited so long the anxiety meds were wearing off.  So they had to come give her more.  But once again, once I requested it they were quick and efficient.  And this hand continued to be shoved in my face.   They came and took her to surgery soon after this.  Two hours later, surgery was complete!  Her time in recovery didn't last long before they were calling for me to come.  She was a bit agitated to say the least.  When I got to her what was the first thing to greet me...this hand!!!  This hand was on my face, in my hair, it was just everywhere.  She couldn't even see me but she could feel me and almost immediately she began to calm down and drifted back off to sleep. 

I definitely don't have an anxiety disorder...but I know what anxiety feels like.  I know my body shakes uncontrollably sometimes!  And I definitely don't understand anxiety! It's a crazy thing!! And I hate that she has to struggle with anxiety disorder and depression!

As I have sat here and just thought through our day...God has been speaking to my heart.  God has used this hand to talk to me!  God reminded me that this hand when it touched my face and touched my hair today found comfort!  That hand when it reached out to the right person found a peace!  And very quickly the franticness began to subside and rest began to come!  God just said Karen, I offer you the same thing.  Just reach your hand out and touch Me!  I can bring you comfort, peace, and rest!  And that was enticing because I need all three of those things in my life right now!

I am confident that God can do just that!  I think I have a problem...I'm not sure how to do that!  So...I've had to stop and just ask God to show me what it means to reach out and touch Him.  What exactly does that look like from my perspective??  How do I trust God??  After all...His plan looks nothing like I want it to!  It doesn't feel like a good plan! It actually feels like I have been overlooked and unloved a lot of times!   How do I trust God when the situation isn't pretty?  I know God is at work in my life, but I'm confident that as I struggle through these questions, God is going to show me exactly what that looks like!  And as I wrestle with spiritual questions such as these...it's going to make me a stronger person!  It's going to give me an insight into others who are struggling through these type situations.  And it's producing in me...a hope!  A hope that as I learn to reach out my hand, I am going to find those things such as comfort, peace, and rest!  A hope that there is purpose beyond what I can see!

And as I say all the time...partly for you...and mostly for me...just because we struggle with issues such as these doesn't make us less of a Christian!!  There's no reason for self condemnation when we struggle through these issues!  Maybe I shall repeat that for me...there's no reason for self condemnation when we struggle!  

24 hours post chemo

Yesterday went smooth at the doctors office!  We didn't have to wait hardly at all!  We went in, they called us within 5 minutes of arriving, we went to infusion center where they accessed his port and drew blood.  Then we went to a room and saw the oncologist!  What a sweet fella!!  He simply wants to do something to help!  He wants to make Zine better as well.  And when doctors are not succeeding, it makes them sad!  I think I'd rather see the professional have it all together side of doctors!  But then you miss out on compassion that these doctors truly have for their patients!  We then headed back to infusion center afterwards for chemo!  God blessed us over and over again from more than one person that texted and said can we bring you lunch...to some that actually came and saw us there to dinner being prepared for us!  Not to mention all those that were praying for us.  We were blessed tremendously in the chemo mess!

At 6:00 yesterday Zine said he needed nausea meds.  And we have had to rotate medicine to keep his nausea under control.  But between two different drugs, the nausea is controlled.  Zine did work a few hours today.  But he's been home all afternoon.  Right now he is getting some much needed physical rest!  He just feels completely wiped out!!  Neither of us slept well last night.  He slept better than me but he still didn't sleep well!

Last night, Conner had mowed for someone up the street and he was pushing the lawnmower up into the garage with his foot after he had finished mowing and the lawnmower was evidently not rolling in the garage as he desired.  He remembers thinking why am I pushing this with my foot when I have hands.  He wasn't thinking, reached down, and says I heard my fingers sizzle and then I remembered why I was pushing it with my foot!  His three fingers were burnt tremendously bad.  I don't know that I have ever seen my boy hurt so bad!  It was breaking my heart.  Not to mention, it had been a bit stressful anyway!!  But even in that stressful moment, God gave me people to calm my heart, a doctor who had lots of emergency medicine experience, and a pharmacist at 9:30 at night who was super duper helpful!  We did not walk that experience alone for sure.

But folks, I just will be real...right now...we are weary!  Really??  Could we have an allergic reaction to medicine with horrible hives for Krisann, a 6 year old on steroids now, chemo for Zine, burnt fingers for Conner, and a surgery for Chloe all in one week??!!  Feeling a bit, no a lot, overwhelmed and just simply put--weary!  We still see God working in our lives--providing us strength and encouragement but we are weary!  And I just want to scream...what are we doing wrong?  What are we supposed to learn?  And we can't figure out the answer to either of those questions.

I have cried a lot the past three days!  I really hate it when that happens!  Doesn't take much, just look at me the right way and I cry.  Sometimes I cry when I'm doing something mindless.  I really really hate it when I cry!  I have an aversion to tears so I try to avoid them.  But I think, these tears have built up for so long that once they started coming, they won't stop!  Surely, surely, they are about out!!  But I keep reminding myself I have had more than one thing stealing my emotional energy this week!  Sooooooo glad that this week is almost done!!!

A little humor from today...Zine has been using a walker inside our house so we don't unload his wheelchair from the car inside.  Well, he is to the point that he is needing his chair inside the house.  His ability to move around with a walker is becoming increasingly more difficult and has become really unsafe for him!  So we had talked about how he could be independent and where he could park to load and unload in our driveway.  What neither of us took into consideration was that when you come off the ramp on our steep driveway what happens!  Thankfully, Zine stayed upright in his chair but he ended up in the road!  Sure am glad the mail lady didn't run over him as he took his little skid down the driveway!  :o)  So...needless to say...we have been back outside parked and reparked Big Blue to try to find a way for him to be able to unload on his own.  It's definitely not a safe or perfect scenario....but sometimes you do what you have to do!  Too bad, I didn't capture that moment with my camera!!

Chemo Day and Kids Medical Issues

Tomorrow is chemo day again!  I would think that as we do these more, the emotional stress would diminish...nope!  I have cried on and off all day today!  Zine has been down emotionally.  Stress has been high!  I might sleep tonight but probably not!  Zine will crash in a  few minutes and sleep all night!  Maybe I should take some of his drugs!!!!

Conner can't seem to shake his upper respiratory junk.  I'm afraid the mommy foot is about to come down and he's about to have to go to the doctor but that will have to wait until Wednesday or Thursday.  So hopefully for my sanity, he will improve greatly over the night and tomorrow!  But I'm afeared his head congestion is settling in his chest!

Krisann had an allergic reaction to her antibiotic from where her congestion settled in her ears.  She developed horrible hives.  I told someone that there was not a spot on her that hadn't had a hive.  She said, there's one mom...the bottom of my foot!  And literally that is about the only place she hasn't had one!  Took her to the doctor yesterday and she is now on steroids and a couple other medicines!  Her hives are better but it is obvious she is still not well!   I have been instructed to take her back to the allergist but I couldn't bring myself to make that phone call today!  But can I just say Krisann on steroids??!!!  It wears me out!

Chloe saw the oral surgeon today and will be having surgery on Friday to have her wisdom teeth removed!  Can we just say for a child that struggles with anxiety....things like this totally can get that anxiety all worked up!  It's exhausting!  And because she has muscular dystrophy, she has to have it done at the hospital.   We learned all the details again today.  We do have to change some of her medicine up for a few days...praying that doesn't do further stress to her emotional state.   Say prayers for this girl this week!

I am definitely feeling the stress in my emotional well being.  My emotions are all over the place today!

I've received two texts, one yesterday and one today, about what could be done for us this week.  The answer is simply I don't know.  This is simply one of those weeks we are just trying to put one foot in front of the other.  And it's not that I'm averse to help...I just simply don't know what would make life easier.  My eyes have leaked tears numerous times today!  Can't even put into words the emotions behind the tears! But definitely feeling worn out already!  There's still a lot to do this week! It's just beginning.  So feel free to text, call, visit, etc.  I'm sure all encouragement will be needed and accepted.  If there's something you think would be a blessing, then just do it!  I think I need someone  to just be in charge of ways to care for us!  My own personal care manager!  Then...I don't even have to think about that!  I like that idea!!  Just not sure it's realistic nor would it give God the opportunity to grow me in areas that I need to be stretched in!

Prayers appreciated this week!  My apologies for incomplete sentences in this post!  Sometimes thoughts are the best I can do!  Hopefully, my thoughts make sense to someone other than me!!

Thank you to all of you who journey with us and lift us up on these difficult days!

Feeling Overwhelmed? Yes!!

Ever had those moments when an overwhelmed feeling overtakes you?  Well, I went there this afternoon!  I try NOT to let life overwhelm me.  I typically just roll with the flow, it works much better that way!  However, this afternoon late, I think I just lost my focus!  I felt my insides gear up into high gear.  I'm pretty sure my heart was beating funky!  I had to remind myself to breathe slowly!    And I felt my eyes get watery and I dislike tears!

When I get overwhelmed, I can know that my eyes have been taken off the One who is control of all things!  And I have placed them on my circumstances!  So, I simply had to take a few minutes to take some deep breaths and remind myself how BIG my God was!   God's got this stuff!   But let me just be real...sometimes I'm tired of this stuff.  And sometimes I feel great frustration.  And sometimes I'm absolutely positive that my plans and God's plans are not in agreement!!

Exactly, what sent me to the overwhelmed place?

1.  Zine gets chemo on Tuesday.  Have I ever said, I hate to watch Zine get chemo!  It makes me purely sick to my stomach!  I hate what chemo does to his body.  And I hate what chemo is NOT doing for his body!  I know...that's crazy!  But it's true.  I hate the side effects of all the chemo!  But I also hate that the chemo is doing what we had hoped it would!

2.  Chloe has to have an outpatient surgery on Friday.  What should be a trip to an oral surgeon's office for removal of wisdom teeth is not so simple.  She gets to go to the hospital and have hers done.  Not to mention she struggles with anxiety to begin with!  That makes things like this much more difficult!

3.  In the middle of all this, I'm trying to get homeschooling started back again!  And...let's just say I wasn't the best record keeper from November forward last year.  So I'm desperately trying to bring my organization skills back to my homeschooling!

4.  I am trying to get Conner to some colleges before I go back to work in four weeks!

And....the one that put me over to the overwhelmed side...

5.  Krisann has had yet another allergic reaction to her antibiotic.  Hives are not fun!  But more than that, the doctor gave me a large discussion about how when you are allergic to two classes of antibiotic that begins to greatly impact their ability to treat infections and that she really suggested we might need to consider detailed allergy testing to determine what drugs she could and could not take. Well, at the moment, that was a bit more than I wanted to hear. My eyes left how BIG God is and centered on what an insurmountable task allergy testing would be for the child who goes totally crazy when there is a speck of blood on her somewhere!  So I had to remind myself that for now, we focus on the hives!  We'll think about the rest later!

 This is a hive on her knee!

This is her back! And she has them on her head, arms, and torso too!

I have direction on what else to try for the hives tonight!  I know when the appropriate time to visit an emergency room is.  And I know that God is in control of even these stupid hives!  So...I just need to put my eyes on Him!  Take a few deep breaths!  And get some rest!