Wednesday, April 23, 2014

Having a Voice in the Medical Community

One of the reasons that we picked up and moved from Houston to Denver was because of the severe lack of medical care that I was receiving.  I almost died on a few occasions, all because a few doctors put their pride and arrogance above my viewpoints and what was happening with my body.

It was like the child's game of hot potato:  the potato quickly gets passed around in a circle, and when the song is over, you hope that you're not the one left holding it.  These doctors were passing me around from one specialist to another, back and forth to each other, all the while hoping that when the "song ended," they wouldn't be the ones stuck with me.  One hospital and group of doctors actually refused to work with me anymore because I was too difficult and they didn't want to end up stuck with me.  They were irrationally angry with me because what they were doing just wasn't working.

This was extremely disheartening.  I felt helpless, scared, and alone.  There was no one to advocate for me, and no one was listening.

There is a project called Rare Patient Voice. They do surveys and interviews for people with rare diseases about their medical care, quality, and services. This is not just for people who have the condition, but also for their caregivers as well. Each time you fill out a questionnaire or survey, you get a bit of financial compensation as well.  When you sign up, you also get a $10 gift card for Amazon, as does the person who referred you.



The information from these surveys is used to improve the healthcare systems.  They work with pharmaceutical manufacturers, advocacy groups and charitable organizations, in order to change healthcare one patient at a time.

I am passing this along, not just because of the gift cards, but also because after all of my experiences with the medical community in the last two years, I think it's extremely important that those experiences be heard. There is a lot that is wrong (and right) with health care, especially for those who have less-common conditions. I'm hoping that this is one way for voices to be heard so that changes can be made.

When you first sign up, you get a $10 Amazon gift card. Then anyone who signs up and puts your name as a referral, you both get another $10 gift card. I just got $20 because I signed up and then my husband signed up under me as my caregiver. I haven't taken any surveys yet, so I'm not sure how much compensation you get for each one, but this is really legitimate in what/how much I've gotten so far.  I also have not received any spam or been contacted inappropriately through this.

So I wanted to pass this on to you and invite you to sign up. Even if nothing comes from the surveys themselves, at least you get a free $10 gift card if you qualify. I haven't gotten any spam, but if that is something you are worried about, you can set up a free second email address and use that.  That's what I did - I also use that email address for Viewpoints.com and Swagbucks.com, through which in the last year I've gotten close to $300 in free Amazon gift cards - if you're interested in that, ask me about it.  (To sign up for Swagbucks, please use THIS LINK HERE)

The diseases that qualify as "rare" are:
Bleeding Disorders
Multiple Sclerosis (MS)
Cystic Fibrosis
Sickle Cell Disease
Huntington’s Disease
Pulmonary Arterial Hypertension (PAH)
Waldenstrom’s Macroglobulinemia (WM)
Lupus
Gaucher
Duchenne Muscular Dystrophy
Hepatitis C
Crohn’s Disease (I'm guessing UC counts as well)

If you think that either you or the person you care for has something that qualifies as rare, you can apply and then explain why you think you qualify.  There are so many more conditions out there that are more rare than those listed here.

If you do decide to sign up, please make sure to put Tiffany Thomas as your referral so I can get credit for it. You sign up at https://www.rarepatientvoice.com/sign-up/

Remember, this is about having a voice.  A voice for those who are to ill to speak for themselves.

Thursday, January 23, 2014

Not today, but tomorrow.

As I was scrolling through my facebook feed today, I found myself extremely jealous of every single stay-at-home-mom (SAHM) with pictures of their kids or complaints of messes or cute things said or done.

I want that.

Two nights ago, I came home from my 5th hospitalization in 3 months.  This doesn't include the additional handful of ER visits.

Yesterday, I was so tired and sick I could barely wake up when Lizzy woke up to eat and to pump.  Then I had to put her in a walker for an hour and half while a nurse came to give me an IV and teach me how to do it myself for the next week.  I then had to call Phillip to come home early from work because I was so weak and shaky, I almost dropped Lizzy and passed out several times going up and down the stairs.

Today, I had to let Phillip take her to someone else's house to take care of her so I could try to sleep some more and "get better."

I hate those words.  I hate it when people tell me to "feel better soon."

Because honestly, I'm not going to.  I have chronic condition.  So even if I make it into the most awesome remission ever, it won't last because the price I pay for remission is an immune system so compromised that just a cold and a yeast infection led to these last three months of hell.

I am so tired.

I am tired of not being able to be a good mom.  Of not being able to raise my daughter.  Of not being able to play with her even when she is home because I don't really have the energy to get out of bed, so we just play on the bed.  Of not being able to take care of her half the time because I'm in the hospital and can't be with her.  Of her crying at night because Mommy isn't there to hold her and she doesn't understand.  Or worse, that she'll get used to me not being around and won't be able to tell her Mommy apart from any other woman in the ward.

I'm tired of missing so many "firsts" because they're done with someone else.  And there's no one there to take pictures or realize it's her first.  Of worrying if she's developing on time because so often I don't get to take her out on walks or read books because I'm tired.  Of worried that she's being ignored or put in the corner while whoever has her is doing their own thing with their family and kids and cleaning and whatever.

I find it heartbreaking and very telling that I have a bouncy seat in the bathroom for Lizzy.

I'm tired of not being able to be a support to my husband.  Of him having to be both Dad and Mom.  Of him having to not only work full-time, but then come home and make dinner and do laundry.  I try, I really do try, but most days I can't.  And he can't.  So the house is a mess, and I hate having to look at it because it's just another reminder of how much I'm failing.

I'm tired of hospital bills.  And doctor bills.  And watching our budget not balance well because we spend at least a thousand dollars a month on medical expenses (literally).  I was tutoring to try to help, but I couldn't these last few months.  I'm tired of being a drain on the budget and not a contributor.

I'm tired of not being able to go to church.  Of not being able to do callings and having to bail last-minute.  Of not being able to make friends in the neighborhood and share the gospel and go to events.  Of forgetting to read scriptures and say prayers because I'm walking around in a fog and habits and routines get so messed up while in the hospital.  Of being a burden on my family and my ward, and of being just another charity case.  Of looks and eye-rolling and sighs when once again we have to ask for someone to watch Lizzy.

I'm tired of being in the hospital with doctors and nurses who don't care.  Of being all alone there and having to fight my own battles when I'm sick and tired and in pain.

Oh yes, I am so tired of the pain.  Of hurting all the time.

I know one day it's going to get better.  I know that Heavenly Father is there and supporting me.  I have seen so many miracles and tender mercies.

But today, it's just hard.  I'm jealous.  I'm tired.  Today, I just want to cry.  So I am.  I'm spending the morning having a pity party and crying for myself and my husband and my daughter.  It's not fair.

Tomorrow will be brighter and better, and I'll move forward with renewed determination to get through.

But not today.  Today, I just want to be able to feel sorry for myself and not have to apologize to anyone for it.  To be selfish and self-centered.  To let it all out - to let out the hurt and frustration and anger and sorrow and pain.  Because it all builds up, and today I just don't have the energy to hold it back or reason through it.

But I will tomorrow.  Just not today.  Today, I'm just going to hold on to Petey (my stuffed lion Phillip gave me my first hospital stay of our marriage) and cry.  Wait for a lady in the ward to bring Lizzy home to me in an hour, then for Phillip to come home a few hours after that, then get an IV going.  And pray tonight's storm cancels work for him tomorrow so we can be home, the three of us, and heal.  Because we need that.

But until then, this is my time to grieve.  To mourn.  To cry.

Sunday, January 19, 2014

Lizzy's Feeding Journey

My lactation consultant (LC) asked me to write a blog post detailing the difficulties that we've had with breastfeeding and getting Lizzy to eat.  She wants to be able to share it with other families who are struggling as an example of a success, because Lizzy has never had formula a day in her life.

Disclaimer:  I do not judge or think less of parents who use formula. Sometimes the baby needs it because of food allergies.  Sometimes the mom doesn't respond to the pump very well and has a low supply because of it.  Some mothers are on medications that pass through to breast milk and are harmful for the baby.  At times, some babies are too sick and need the weight gain that comes better through formula than breast milk.

At the end of the day, we can all agree that breast milk is best overall for the baby.  There are antibodies and nutrients in there that no amount of formula can quite make up for.  This blog post is designed to give encouragement and hope to those who are going through feeding difficulties and are ready to throw in the towel.  I hope that I can inspire and uplift those who are struggling but want to continue.

Lizzy was born with a severe posterior tongue tie and could barely lift her tongue off the bottom of her mouth because it was attached all the way across.  I also have flatter nipples, so between the two, Lizzy was not able to latch on without a nipple shield.  Even then, she had a difficult time sucking and eating.  The shield began to be extremely painful, and I would have to switch sides with Lizzy about every 5 minutes because the pain was so intense.  The problem with this is she developed a foremilk-hindmilk imbalance and was only getting the low-fat part of the milk.  This can lead to weight loss, and she was having lots of green diapers.

 Look at how little she was!  She weighed 4.5 lbs.

After two weeks of this, we went to see an LC, who has turned out to be a strong support and a good friend through this entire journey.  I am so grateful and blessed that she was the one who was assigned to us:  she is the head of the lactation department at Texas Children's Pavilion for Women, and was extremely knowledgeable.  It was she who diagnosed the tongue tie, which the regular doctors weren't able to fully figure it out when Lizzy was first born.

Normally this would require surgery and anesthesia to fix, but thankfully my LC knew of a pediatric dentist who could it with a laser cutter.  There was only one in the city of Houston, and I found out later that there aren't very many in the U.S. who can do it.  I feel like it was a miracle from Heavenly Father that this particular dentist was not just in Houston, but only about 30 minutes from our house.

We took Lizzy in right away; at this point she was three weeks old.  To make a long story short, the laser cutting went well (and by that, I mean it was horrible and worse than shots, but it worked).  After three weeks, however, we noticed that it had re-attached and we had to go back a second time.  For this entire story, please see this blog post I wrote.  Finally she completely healed, but at this point she was 9 weeks old and was so traumatized by our attempts to breast feed that she just cried and cried whenever she saw my breast or her lips touched my skin.  This time period was probably one of the darkest, most heart-breaking times of my life.  It's all detailed in that blog post.  It was traumatic for both of us, but I also learned a lot about the Savior, my Heavenly Father, and Their love.

Throughout all of this, I was really hoping that we would eventually be able to latch on.  I did not want to create nipple confusion, so we syringe fed her milk that I pumped - she would suck on one of our fingers while we used a syringe to slowly push milk into her mouth through the corner.  We got a pump through the insurance company, and every time she ate, I would pump afterwards.  This led to me having a great supply, and I was making almost double what she ate!  She would eat about 16-20 oz per day, and I was pumping around 45 oz.  We bought a deep freezer and began storing the milk in there.  By the time Lizzy was 4 months old, we had frozen about 1500 oz of milk (about 60 days' worth)!



Feeding Lizzy with a syringe.

This whole part was very difficult, though.  Each syringe only held about half an ounce of milk, and she would eat 3-4.5 oz each feeding.  It was a time-consuming process, and it took her about 30-60 minutes each time she ate.  At night, it was always an hour long because she was tired.  This was especially difficult for me because she would wake up, I would get her syringes ready (15 min), feed her for an hour, put her back to sleep (15 min), pump for 30 minutes (that's how long it takes me to empty), and then clean up by washing all the pump parts and syringes by hand (15 min).  This whole process would take almost 2 1/2 hours, and then I would only get 30-45 minutes of sleep before she woke up again wanting to eat.

For about two weeks I did this until I was so completely exhausted I had a breakdown.  One of my mom's friends, an extremely dear woman whom I love, flew down from Denver for a week (her husband is a pilot and her kids are all grown) to help me out.  She would get up and feed Lizzy at night, and I would pump during that time.  It was amazing!  All of a sudden, I was able to sleep in two hour blocks instead of 30 minute blocks!  When she left, I asked Phillip if he wouldn't mind taking over the nighttime feedings while I pumped.  He is such a dear, dear man - he didn't even have to think about it.  He just did it, without complaining or murmuring at all.  He never threw the "I have to work full-time" card at me, which I love him dearly for.



Anyway, by the time Lizzy was healed and it had become clear to us that she wasn't really going to latch on anytime soon, we had to start looking at other options than syringe feeding.  She had gotten a bit "lazy" with it  - her suck was really weak, and she just would lie there with her mouth open, waiting for us to just push the milk in.  This was a problem because it would cause difficulties with solids and speaking later in life.  We saw an occupational therapist, who gave us some exercises to do and suggested we start using a bottle.

The bottle we settled on was the Medela Calma bottle.  The reviews showed that it was the best because it had a series of chambers that opened to allow milk to come through the nipple ONLY if a vacuum was created.  This mean Lizzy had to actually suck.  She was pretty angry with it the first time we used it, but she figured it out after about 10 minutes.  It turned out to be worth the expense (about $20 for 1 nipple and 2 8-oz bottles).  Her mouth and tongue are a lot stronger now - she can now finish a 6 oz bottle in about 10 minutes, whereas before it would take her over an hour to get 3-4 oz down.

Lizzy using her new bottle.
Around this same time I started having symptoms of thrush in my breasts (itchiness and red, shiny nipples).  I just ignored it because I didn't want the hassle of trying to have to go to the doctor.  I didn't have a car, and we were trying to save money.  I got a cold, though, that started to turn into an ear and sinus infection.  Because of my Crohn's Disease and having no immune system due to my Remicade infusions, infections can get bad quickly in me.  I had c. diff. three times in 2012, though, so antibiotics are now only used as a last resort.  Instead, my primary care physician (PCP) gave me a week of prednisone to try to lower the inflammation and let everything drain out.

I hadn't told him I thought I had thrush, and what I didn't know is that prednisone will make yeast grow completely out of control.  Next thing I knew, within about two weeks, the thrush had gone systemic.  It was in the milk ducts, making my breasts burn and ache.  The areola was completely red, raw, and bleeding every time I pumped.  I had white patches in my mouth, as well as a yeast infection.  I put a call in to my PCP, who gave me two weeks' worth of diflucan (an antifungal).  After a week, though, I was feeling worse so he admitted me to the hospital so I could get IV antifungals for a week or so.

Visiting Mommy in the hospital.

Through all of this, I kept pumping.  We checked with the pediatrician and LC each time I got a new medication to make sure that it was ok to still give Lizzy the milk.  Surprisingly, very few common medications are bad enough to have to "pump and dump."  I also downloaded the app LactMed, which gives information on how medications affect breastmilk and also milk supply, among other things.

Two weeks after I got discharged from the hospital - about the middle of November - I still wasn't certain the thrush symptoms were gone, but my PCP said it was fine.  I then promptly got influenza, in spite of having the flu shot the month before.  Luckily, I did not have to hospitalized for this.  I did have to wear a mask for a few days, which Lizzy hated.



The next weekend, I got mastitis really bad, probably as a leftover from the thrush causing so many bleeding cracks in my nipples.  I still had one that would re-open and bleed a bit each time I pumped.  The oral antibiotics were not clearing it up, so I had to be hospitalized again until the day before Thanksgiving.  We then made a quick trip to Denver, where I had to go to the ER to make sure the symptoms I was having were Crohn's and not c. diff.  I had been on a lot of antibiotics for the mastitis, and antibiotics always makes my Crohn's flare up.  Since c. diff. is extremely contagious, I didn't want to be flying with it.  The test came back negative, so I was given prednisone to help get over this hurdle.

Unfortunately, however, the prednisone made the thrush come back with a vengeance.  Along with this came a problem:  the Crohn's flare had caused a perianal abscess to form.  I called my PCP because my GI was on a 2 month break as she switched practices.  He had me come in and insisted it was just a swollen gland.  I disagreed with him, but he kept insisting.  This was a Friday afternoon, and by the time Friday night hit, I was in so much pain I could barely walk.  The next morning was a ward (church) Christmas party.  Not only had I volunteered to make a couple of breakfast casseroles for it (which Phillip ended up doing, bless his kind heart), but Santa was coming!  There was NO WAY I was going to not have a picture of Lizzy with Santa for her first Christmas!






After a quick stop at the party, we went to the ER.  Yes, it was an abscess!  (Told you so!)  I was sent in for emergency surgery, which went well.  The next day (the second Sunday in December), I got an extremely high fever:  I had gone septic.  I was immediately given two different IVs with 5 different antibiotics going into me until they could figure out what bacteria was behind the sepsis (it turned out to be e. coli.).  This was the first time that I had to pump-and-dump, and Lizzy began using some of the milk we had frozen.  It was heartbreaking to watch that "liquid gold" go down the sink.  But that many antibiotics at once was just too much, the pediatrician said.

Phillip and I called our moms, and they came down from Denver and Washington to help take care of Lizzy and me when I was released from the hospital.  I was still pretty weak for a while afterwards.  Again, though, I kept pumping.  I made sure to pump my normal 5 times per day (although some days in the hospital I only did 4).  My supply dropped a ton because my health was poor and I wasn't eating much.

Grandma Lindsey
Grandma Lindsey, Aunt Annie, and Aunt Rachel
 Grammy Celeste and Zoe


Slowly I was able to build my supply back up to 35-40 oz per day.  I brought it up by eating more, drinking at least a gallon of water per day (literally), and by power pumping a lot.  This is where you pump a normal session (in my case, 30 minutes).  Then I stop for 10 minutes, then pump for 10 minutes again, then stop and start, and then stop and start (so I'll finish an hour after I finish a regular pump, actually pumping for a total of 30 extra minutes).

Phillip and I celebrated our two year anniversary on December 17, just a few days after I got out of the hospital after the sepsis.



We had a bit of a break for Christmas.  Lizzy got to see Santa, and she had a blast with opening her presents and wearing her pretty Christmas dress again.






About two weeks after the sepsis, I was still on antibiotics and prednisone, and the thrush was really coming back at this point.  I was taking diflucan off and on per doctor orders, and he had me postpone my Remicade infusion.  The problem was that the prednisone was feeding the thrush more quickly than the diflucan could kill it.  My PCP felt like some of my symptoms were related to a mental illness and insisted I try an anti-anxiety medication.  Since I don't have anxiety at all, I had a bad reaction to it and was hospitalized for a couple of days.  This was at the beginning of January.  At this point, I fired my PCP- it was the second time he had misdiagnosed me and I landed in the hospital because of it.

As you can imagine, me being gone so often and Lizzy being watched by some ladies in our church, it was all a bit traumatic for her.  She would have night terrors during her naps.  It was so heartbreaking to hear and watch.  I wanted so badly to be able to just stay at home with her all of the time and take care of her.

At times I wanted to try to latch her on - she would sometimes root around my breasts when she was tired or hungry - but with the thrush, I didn't want to pass it on to her.  Instead, she has become my pump buddy and tries to chew on the flanges!



In the middle of January I was three weeks overdue for a Remicade infusion.  I started having awful lower abdominal pain.  I had suspected for about a month that I might have a urinary tract infection (UTI) because I was constantly having to pee, urgently, and then never feel completely empty.  Once again, I ignored it, until this last week the pain suddenly became really bad.  We went to the ER

That same day I was FINALLY able to see my GI again!  I was so excited to see her, I almost cried.  As I told her everything she missed out on by being gone, she got tears in her eyes on my behalf (and Phillip's and  Lizzy's behalf, too).  She said what I had been trying to talk the PCP into:  just do the Remicade infusion to get the Crohn's under control and get off the prednisone, and then we would worry about getting rid of the thrush once and for all.

I had my infusion on Friday, but it really wiped me out this time.  I was exhausted all day Saturday, and then the thrush really went wild.  More so than we anticipated....the pain was so bad, it hurt my breasts to breathe.  They would get shooting, stabbing pains every time I inhaled.  We went to the ER Saturday night (last night) and I was admitted to get IV antifungals.  So here I sit, missing my husband and baby girl so much.  They are perfection and the most wonderful, priceless thing to me.

Lizzy is such a good, happy, well-behaved baby, and I really appreciate that a lot.  She is now 6 months old (and 2 days), and I can't believe how tiny she was compared to how big she is now!
Just a few days old.
 3 months old, laying next to one of her preemie onesies
6 months old!

Finally, I have to say that I absolutely could never had done any of this without the support I have gotten from friends and family.  I have felt your prayers on my behalf.  I am grateful for those who give up their time and other talents to help give us rides to doctor appointments and baby-sit Lizzy.

Throughout all of this, I am most grateful for my incredible Superman of a husband, Phillip.  He is my rock and strength.  I am in awe of how well he has stepped up to the plate in taking care of Lizzy, working, and supporting me.  He amazes me.  I have been so blessed to have him as my husband.  I can't imagine how hard this would be if I had a husband that murmured or complained.  He takes care of Lizzy so well - I don't have any worries about her being with "single" dad.  He is just the most incredible father.











"Camping" on the landing while the ward had a Daddy-Daughter campout 



The two left are Lizzy.  Zoe is Phillip's sister.


If I even mention that I want something, Phillip is all over it.  He is so sweet, kind, tender, and loving.


Tootsie Rolls - one of my favorites and a big pregnancy craving.  He left this for me one morning before going to work.


I can't put into words the depth of how much I love him and am amazed by him.  The words just seem so.....cheap when compared to how I feel in my heart.  I love him.  I love him more than anything and anyone in this world, and I am so grateful that we get to spend eternity together.  I found this poem online and I think it helps a little bit put into words what I want to say.

Amazing man, You
by Riggs
I never thought I'd be where I stand
It was only in dreams where I could hold your hand
I never thought that you'd be my man
I never thought I could, or would, or can

It's the things you do that make me wonder how
How we made it through
How it could be you
To love me...

And as I lie here, sitting in my bed
Listening to you breathe close to my head
I smile, I sing, I thank God you're with me
And pray that it'll last for eternity

You make me feel loved, in so many ways
You make me smile each and every day
You care for me, you listen, you're always here for me
And in return everything you are to me, I wanna be

Thank you for the good times
And even for the bad
Thank you for understanding
Everything I am

I know it's hard sometimes
But you always get me through
It's amazing what love can really do
And it's amazing that it brought me to you



Untitled
How do I begin to tell you how lucky I am
To have you in my life?

I'll start by saying what an honor it is
For me to be your wife. 

You're my best friend in the good times
And my rock in times of sorrow. 

You're the reason for sweet yesterdays
And my promise for tomorrow.

I never thought I could feel this loved
Until I became your wife.

You made this year and every year
The best one of my life.

This was our song we danced to at our wedding.  No amount of time will ever be enough to spend with Phillip.  I hate being away from him, and I love it when we're reunited again in the evenings.  He makes me happier than I ever could have imagined being.


Some fun pictures of us.  Oh goodness, how I love this man!