Friday, September 27, 2013

Second verse...

You would think that after two horrid weeks of nothing but nausea, Shelbie would be doing 100% better after finishing the extremely harsh set of pills to kill her bacterial infection.  You would think that in return for all that she sacrificed, things would be much better...well, they're not!

She finished her meds on Monday and she continues to be as sick as she was when I first took her to the doctors.  No change!  I called the pharmacist to see when we might expect to see improvement and he said we should have seen it the last few days of the meds.  He also said that the last few patients he has seen with H Pylori, they have not responded to the meds.  It seems to be some resistant strain to treatment!

I called our doctor next.  Of course, doctors tend to think they are important or something and have more security than the President of the United States.  It use to be that you could ask to speak to a nurse and that was usually do-able but now it seems you can't even do that.  I was a bit frustrated to be speaking to a secretary about something they have no idea about.  I had to tell her what was going on then wait for her to pull Shelbie's chart, read through it and then tell me that the doctor had noted that if she wasn't better after treatment, she would have to get care from a specialist!  She wouldn't even let me leave a message with the nurse.  She flat out said, "You'll have to take her somewhere else.  We can't care for her here."  I was so surprised by this response since I have never had problems like this at our clinic before!

I called our GI doc in Boise and again was stopped cold at the secretary.  To my wondering surprise, our actual doctor called me back within about 3 hours.  He confirmed that they are seeing many more cases of resistant H Pylori.  He needs a bunch of extensive testing done but we will need to see our local doc in order to get things rolling.  So, I'm frustrated and Shelbie just wants to be fixed.

I wish doctors could understand what it feels like to put up with attitude from secretaries and nurses. I wish they knew how gut wrenching it feels to hear, "You will have to find someone else to help you."  You're a doctor...HELP ME for crying out loud!  Have doctors reduced themselves to only treating strep throat and ear infections?    Who knows where we go from here...mostly, I'm just trying to get my wits about me and figure out what to do next.  Arghhhhh....

While I'm ranting...can I just say the next few weeks could prove to be hair raising as Obamacare comes into play.  I am already hearing horror stories from people who's policies are obsolete and the new policy is 65% more expensive than the one they privately carried!  A 65% hike on my policy would put us over $1000.00 a month in premiums which I pay for privately! I'm a little stressed...just a little.  Healthcare is really starting to grind on my nerves.
Photobucket

Tuesday, September 24, 2013

Looking forward...

The other day, a new person posted on the Shwachman Diamond group that her son had just been diagnosed with Shwachman Diamond Syndrome.  She posed the question to the group, "What can I look forward to..."  I thought that was an interesting way to pose the question.

I'm sure she got the information she was hoping for.  She got more than enough advice on pancreatic enzymes, bone marrow biopsies, infections, and the likes.  Her question got me to thinking, not only how I would respond to her but what those words really meant.

Well, here is a little more than my allotted 140 characters of my response to the question, What can I look forward to with SDS?

1.   There will never be a dull moment and if you do find yourself in a dull moment, embrace it, no matter how big or small.  They don't come very often.  Learn to love the dull parts of life, the mundane, the ordinary. Someday, in the not so distant future, you may find yourself craving those dull and boring moments.  Someday, you may even forget what those moments look like and ordinary will be the farthest thing from any point of reference you have, compared to your 'ordinary' friends.

2.   Welcome to the classroom of chronic illness!  It's a smallish class and the lessons can often be hard to grasp and a little crude, even traumatic at times. You may be asked to repeat classes over and over, it's not because you failed the test, it's just so important and bears repeating.  You'll be surprised at your level and depth of interest in things like white blood cells, platelets, how the pancreas functions and even the shape and color of poop!  I said crude didn't I?  You will never settle for the luxury of not learning.  You will become a rock star at research and make the FBI look like amateurs and doctors will write blog posts about how insecure you make them feel.  Don't listen to them...you are advocating for the most important person in the world- your child.

3.   Some people spend a lifetime trying to break through the molds of society, refusing to be a round peg in a nicely fitting round hole.  You won't have to exert that kind of energy to be different.  Don't worry about tattooing your body in rebellion, piercing the shadowy parts of your soul like some wayward, puberty stricken teenager; chronic illness takes care of all that alienation for you with very little effort on your part.  When people ask how the kids are...the transformation magically takes hold with your first response, "Not good."  They will turn on their heels or some brave folks ask a few times before they learn it's better not to ask because they will never understand the volumes involved in the word 'FINE'.  With that, you will feel different, unique; like someone with their own special place in the world so far removed, no one will ever bother you.

4.   You get a front row seat to some of God's greatest miracles!  Those are pricey seats you know.  Not everyone gets the backstage pass to see God's hand in nearly everything! Not only that, those little and big miracles are happening right before your eyes with your own little creation of a child.  Be careful where you are looking, they may not always be right in front of you but they are there, just look.

5.   Sometimes, the things we need to learn in this life, can only be taught with chronic illness as our teacher. There are moments of amazement as you watch your child rise above the challenges; determined and more courageous than a fleet of Davids facing Goliath sized problems.  Perseverance, grace and love, along with compassion for others, will blossom like a succulent desert rose when all around you is the scorching earth.

Speaking of love, a mother's love is fierce and deep as she cares for her stricken and sick kids.  She will take the questions and accusations and roll them off her back, never showing the deep scrapes to her self esteem left behind.  They will scab and scar and she will go on carrying that love to exponentially deep levels that very few mothers will ever feel or ever thought possible but you will know that feeling and it will move you to tears at any given moment, in the most tender moments, in the grim and dark moments, with every first accomplishment and every last, even in those moments that catch you off guard and no one will recognize or understand the slipping tears of pure love.

And that my friend...is what you have to look forward to!



Photobucket

Friday, September 20, 2013

Blessed?

Well, well, well...What a day I had today!  It didn't start as I had planned for it to, in fact, it ended up being the farthest from my plans!  That's life right?

The foot problems continue for me.  You never really understand just how much you use your feet and legs until you can't!  I wrote a somewhat comical take on the problem over at my other blog, you can get caught up on the story if you want by going HERE

The tarsal tunnel that I was diagnosed with on Monday hasn't been getting any better despite keeping it wrapped, elevated and iced.  The ACE wrap just wasn't doing enough to keep my ankle immobilized so I stopped in at my Physical Therapist's to see if he had any ideas.  He took a look and suggested I come in and let him work on it.  I made an appointment for this morning. (Friday)

So, I head in first thing and he examines things and determines that my Achilles tendon is also inflamed and swollen.  I knew that because bending my foot is super painful.   He did E-Stim, light therapy, deep tissue massage, heat and ice!  When he was through, he said, "You have no idea how serious this is do you?"

"No.  I guess I don't, it just hurts and that's all I know." I replied.
"You might be upset when I tell you that I really want this foot completely immobilized and I am going to call over to the urgent care to see if they can see you right now because you could have a blood clot as well. They will also fit you with a walking cast or brace."
"Are you kidding me?  Isn't that overkill? How long will I be in the brace? Can I keep working?"  questions just bubbled out of my mouth.  I was teetering between anxiety and panic at the thought of not being able to work!  My second thought was anger that I don't or can't take better care of myself.


I did as I was told and went to the Urgent Care.  I really liked the doctor I saw and of course I knew him...surprise, surprise!  Anyways, he agreed that I either had a blood clot or phlebitis so he sent me to the hospital for imaging.  He also confirmed that my Achilles tendon is a mess due to the inflammation of the tarsal tendons etc.  Not only that, my Ankylosing Spondylitis which is not even remotely close to being under control is making everything that much worse and recovery is going to be slow!!! Or so he said.   UGHHH!!!

He too said, "This is a very serious condition.  You have to try to stay off your feet as much as possible. These types of problems can go on for a year or more, you may end up having to have surgery on the tendons and worse case scenario, you could have permanent nerve damage in your foot!"  Good grief!!!

I went to the hospital...no blood clot!! That made everything way better!!! I do however, have phlebitis.  BOO!

The walking boot is actually a blessing.  It takes my pain from a 19 to an 8 out of 10!

Anyways, as soon as I was done at the hospital, I ran to my friend's place in Rigby to apologize for not being there in the morning like I had promised, to help get things set up for her massive yard sale tomorrow to raise money for her son whose is awaiting a liver transplant.  I didn't get there until 12:45 in the afternoon!!  I felt so bad.  Then, I had to dash to work in the city which I was already late for.

Driving hurts so bad so all the way there, I whined and complained to myself.  I was mad and frustrated.  Doesn't God realize that I am working as hard as I possibly can and to be incapacitated is not at all helpful? I didn't want to be mad at God.  I'm not mad at God.  I just don't understand sometimes, why I have to go through so much nonsense!  I try to learn from the problems and trials.  I try to be a good person but sometimes, I just don't understand.  My favorite complaint of all though was this one..."I thought families who have a missionary out are suppose to get extra blessings or something?"  That was a priceless complaint and a whine on steroids!!

But then...I thought of the letter I wrote Spencer last week.  I was telling him how important I thought the word 'REMEMBER' was.  If people could just remember how much they have been blessed, they would never turn their back on God.  Boy, that did it!  I started remembering all the blessings I have been given.

Even though I feel positively lousy most days, I am blessed to be able to get through the work and support my family.

Even though my kids are always sick with one thing or another, they still manage to smile and do the best they can.

Even though Spencer has been sick most of his mission, he has had one really good week!  That is huge!!

Even though a lot of the time, I am tempted to say how much I hate my life, I remember my dear friends who are clinging to life.  Who would gladly trade their dying bodies for one that is just a little broken.

Even though I hate working 11 jobs, it's better than having just one job that doesn't come close to paying the bills.

Even though Shelbie has been downright sick for more than a month, she is starting to feel a little better.  She is keeping food down a little more each day and is back to work.

Even though it seems like we have had nothing but problems since Spencer left, each problem comes with the blessings to God to help us get through them.  Somehow we manage and somehow, that's enough.  God has given us good gifts and even just enough, is enough.

I remember Spencer writing once and in reference to his poor health, he said, "Heavenly Father didn't promise me I wouldn't be sick at all, He only said my health would be sufficient, and it is.  I don't feel well, but he helps me get up and get going and that's all I can ask for."

So, tonight I am feeling a little better about things...we are blessed.  Despite the problems, we are blessed and God is good even when my foot is killing me and I have no idea how my life is going to work out given the latest set backs but I KNOW He is already working on a solution!  He will let me in on His plan one of these days...until then...we just hang in there...and try not to complain too much! ;)

Photobucket

Monday, September 16, 2013

Prayers and Miracles

I have been in awe lately at the workings of God.  He's a pretty amazing guy and one day, I hope I will discover how He does what He does!   I have many people dear to my heart that need prayers and miracles and want to share a few stories here...but before I do...

Here is a Shelbie update...Still sick!  7 more days and counting of treatment.  Fluids helped a lot last week and got her through a really tough Saturday photo shoot.  She had to be at a wedding from 8am until 10pm.  I had to work until 4:30 Satureday but dashed down to a city about an hour from here to where she was.  She was going to have me take the photos of the reception.  Turns out, she was really pushing herself and was able to get through it all!  I was amazed at her strength!  Not only that, she was really blessed.  There is no other way she could have pulled that off but that a fleet of angels were watching over her.

You know what I love about other Christian religions?  They keep prayer journals and participate in prayer circles.  So often, I have had friends of other religions tell me they have added our family to their prayer roll, or journal.  I so appreciate that!  Prayers, no matter where they come from, changes things!  Once, when I was really sick and my parents were serving a mission in Thailand, I had my own congregation of Nuns praying for me! I think that is so neat!   So, I asking everyone reading my blog this week, to  participate in some miracles!  Are you up for that?  All that requires is that you take a minute or two to pray for some dear people who really need a break from the fear and sickness.

1.  This is my dear friend Damen!  I actually know Damen.  Well, I am good friends with his mom.  Damen was hit with an autoimmune disease just 6 years ago that completely destroyed his liver!  He was fortunate to receive a liver transplant back then.  Well, today, he is suffering from chronic rejection,  and the autoimmune disease is back, destroying his new liver!  He is married now and has a beautiful wife and a 6 month old daughter.   Damen has always had a cheerful attitude and bright countenance and has done so much to give back!  His wife is amazing!  She has been working full time as a nurse, being a mom and taking care of her very sick husband.  They work hard but things are becoming too much and they really need a  little help!

Damen will be needing another transplant but before he can be placed on the list, he has many hurdles to jump like, removing his colon due to disease and he is currently fighting a horrible infection, seriously, the worst infection.  He has been in the hospital for three weeks!

His family and friends are hosting a fundraiser that consists of an online auction and a yard and bake sale this weekend!  If you have a service, or items you could donate, would you consider contacting me or the family and help out?  If you aren't able to do that, please include this sweet family in your prayers.  They could really use a break and honestly, some miracles.



Here is a the link for their Facebook page  https://www.facebook.com/events/168268746699598/  and a link to their blog so you can get to know them better! http://fundraiserforasuperhero.blogspot.com/

Next is my internet friend Alisa.  I have never met Alisa but I have been following her blog for some time.  I do however, know her brother and sister in law.  I love this family, the whole extended family!  Alisa has been dealing with Melanoma!  The worst kind of cancer to have if you ask me.  She is young and vibrant and has a beautiful little family.  Today she is undergoing surgery to remove a large tumor from under her arm.  Please pray for her.  Pray that the treatments will work and she will finally be rid of cancer and able to be home with her husband and boys!

I have two very good friends who were both hit with pancreatic cancer this summer.  One was a teacher to all three of my kids and the other is a woman who, along with her husband did so much to help me when my kids were just diagnosed with Shwachman Diamond Syndrome.  They were so loving and supportive and have served the good people of Africa on a mission for the LDS church.  They had us over countless times for dinner, Christmas and even watched my kids for me when I wasn't coping very well.  I love these special women.  I don't think pancreatic cancer has to be a life sentence...Many people do survive...I am praying for their safety through treatment and into remission.

Well, that's my prayer list for this week.  Please consider the power of prayer.  I know without a doubt that it chases fear away and leaves in it's place peace and postcards from Heaven!!
Photobucket

Thursday, September 12, 2013

Dehydration


It became pretty clear Wednesday night that Shelbie was dehydrated.  By Thursday morning, she was in bad shape.  Since Shelbie was two weeks old, dehydration is something that comes on fast when she gets sick.  We were always in the hospital with her when she was a baby because of dehydration.  Makes me wonder why?  Anyways,  I called the doctor but after I hung up, after just being able to leave a message, decided I wasn't going to wait around for a late afternoon call so, I loaded her in the car and we took off for his office.

They were great and got her right in.  It didn't take the doctor long to assess things and get an IV set up for her.  They ran two liters of fluid and some IV Phenergan on top of the Zofran she was already on.  Usually, fluids turn a bad situation completely around so I was expecting a miraculous recovery.  I thought after being there nearly 4 hours, she would walk out and beg for a cheeseburger or something.  Well, that didn't happen.  She was no better, not one bit.  Oh, did I mention she has lost 6 pounds in three days?

The difficult part is that when she gets sick, it upsets the whole apple cart.  Her mitochondria, which is like scaffolding begins to fall over and it's not just the bacterial infection but the dysautonomia gets out of control.  She is constantly in pain in every joint of her body.  During her infusion today, she could hardly lay there because of the deep pain and aching.

Sadly, there is nothing much anyone can do.  Supportive care is all we can expect.  This afternoon, she also broke out in lots of petechiae.  Did I not just say I was afraid of that happening?  I didn't have the heart to ask for a CBC and see what her platelet count was. If could just be a fluctuation because she is so sick.

The jury is still out on whether or not she will be able to have her IVIG next week.  Starting that could add one more thing her body can't handle.

The pharmacist was right when he said this was going to be fun!  Boy, he wasn't joking.  I had no idea how hard this would be on her.  I have been reading a lot about H Pylori and it is more common than one thinks and even though you may not have the horrible symptoms like Shelbie has, it can still be causing problems.  It also said that if one member of a family has the disease, the whole family should be tested.  I asked our doc today and he said even if we all showed up with it, he wouldn't treat us unless we were symptomatic.  I asked him why and he said, "You're living with the why." then pointed to Shelbie...the treatment sucks!

Well, I have lots of work to get caught up on tonight and get ready for another day of IV therapy tomorrow.

We did see a little miracle today!  Shelbie had two major photo shoots scheduled for this afternoon.  There was no way she could have done those but rescheduling them wouldn't have worked either since they were bridals for a wedding this weekend.  We were telling the nurse we had to run the fluids fast so we could be out of there in time for the photo session.  All morning Shelbie was praying she wouldn't have to do the photo shoots.  Just as the IV got started, both parties called to cancel!!  The bride got sick unexpectedly and we had a some rain so that ruined the outside photo shoot!  As soon as she got those two texts, she just broke down into tears.  I said, "What's wrong?  Are you in pain?"
"No," she said, "That's a miracle.  God really cares about me."

Yes, God does care about Shelbie.  I was so grateful for that experience.  She has been struggling so much this year as she tries to figure out God and trials and everything.  She has been angry so I was moved to see her heart soften and feel the Spirit.
Photobucket

Tuesday, September 10, 2013

Green around the gills

Shelbie is officially sick.  We haven't experienced this degree of sickness in a very long time!

She started her H Pylori medication, finally, on Monday!  Not even an hour after her first dose of 5 pills, she was laying on the bathroom floor crying and calling me to come home from work.

If she isn't laying in her bed crying with nausea and pain, she is laying on the bathroom floor.  She hasn't eaten anything but mini soda crackers and a slice or two of bread.  Even water won't settle in her gut!

I think she is dehydrated and that might be aggravating the side effects of the pills. Despite all the Prevacid she is taking, she is full to her eyeballs with acid.  I keep telling her that food will help to regulate the acid but she won't eat because of the pain it causes and the increased nausea.

In addition to all of this, she is completely off her Citalopram, her anti depressant.  That is making all this so much worse.  Today, she was mad at me because I didn't make any attempts to help her.  She was upset with all the appointments she has this week for photo shoots.  I told her she should cancel them since she couldn't even keep her head up straight.  She got mad because she can't just cancel.  Then when she was editing, she cried because she was so tired and feeling so sick.  I encouraged her to just edit two pictures then lay down and rest.  She got mad that I was not giving her permission to not edit!

Good grief!  What a mess.  I know she is not in her right state of mind right now and I don't blame her but it's still hard to hear her tell me I don't care about her.  I do care but that doesn't really matter, her perception right now is that I am not doing enough to help her or doing the wrong thing to help her.

Oh well...just two more weeks of this.  I feel so sorry for her.  She is clearly very sick.

Sam's been doing his best to help her.  While I was at work this afternoon, he made soup for her.  She didn't eat it but it was nice of him to try.

If things are the same tomorrow, I may have to take her up to the hospital for some fluids.  Ugh.

Not only that, in the past when Shelbie has had a bad illness such as this, it revs up her immune system and it starts attacking the things it shouldn't, like platelets.  It is also creating her mitochondria to short circuit and that stinks.  You can just see her body fighting so hard.  It's kind of sad to watch.  It's a helpless feeling as well.  Hopefully, she gets through this without any horrible repercussions.

Photobucket

Wednesday, September 4, 2013

As our world spins...wildly out of control...

Just kidding!  It's spinning alright and I felt a little queasy on Monday and Tuesday but things are humming along now.

Heard from Spencer on Monday.  He sounded a bit discouraged.  He has a companion that isn't interested in training him or working so that has him frustrated.  He wants to be on the go.  Aside from that, he is sick with all the GI stuff but has had a respiratory infection as well to complement things.  Since we can only communicate through email once a week, I don't know if he has made it to the hospital for testing and what the results were.  That had me all wound up and in a dither on Monday.  He hasn't received any of the packages I sent which upset me as well.  The most important of them had his Medic Alert bracelet in it which would be really handy for when he goes to the hospital.

It's pretty crazy trying to do all this from a distance when communication is less than desirable.  I just have to keep reminding myself that it will all work out.

Shelbie still hasn't been able to start her medication for her bacterial infection.  We are trying to ween her off the Citalopram which causes a drug interaction with the new stuff.  Needless to say, by late afternoon, she is pretty sick and nauseated.  It's all wearing on her.   I am hoping to get things started in the morning.  She didn't take any of her usual meds tonight so we'll see.

That's the news from our neck of the woods.  It can always be worse...

I have a very dear friend who is fighting for his life in a Utah hospital right now.  He is in a very precarious situation with liver failure and a pre-cancerous colon and infection running rampant.  Please remember him in your prayers.  There comes a point when a miracle is what it will take and he really needs one right about now.  He has a sweet wife and a new baby daughter and they need their daddy and husband.  There is no doubt in my mind that prayer works, especially the combined prayer and faith of many.  I know I appreciate so much, the prayers that are offered for us, regardless of the religion or faith from which they come.  To me, all prayers come from the heart to the same God.

Photobucket