Tuesday, May 31, 2011

in rolls the rain

The weather this week seems to be fitting my emotions.  It is all over the place, with a nice side of clouds, rain, and thunder.  My heart aches so badly for a life that I never got to know.  I want so badly for this part of it to be over.  My body is sick and I am still running a low fever, and my old friend aphthous stomatitis reared its ugly head.  When my body is stressed, my immune system freaks out, and I get painful ulcers in my mouth. (Sometimes in my nose and throat, too.)  It is a constant reminder that something is so very wrong.

It took all day for my new doctor to get my records from the emergency room.  They wanted me to get blood drawn this Friday, and wait until Monday to come in.  I just couldn't wait that long.  I want closure.  I want so badly to know that this is over, and that my body can start to recover.  I never thought that I would want one, but I let them know that I want to schedule a D &C.  Hopefully it can be done tomorrow...and hopefully they can do it across the street at the hospital so that I can be sedated.  They gave me the first morning appointment tomorrow.  

I have been up late at night, unable to sleep.  This weekend blurred into what seemed like one long, terrible day with episodes of Eureka mixed in for distraction.  Eventually I would pass out from exhaustion.  I've been a weepy mess.  I put on my jeans that had gotten too tight, and started to bawl when they buttoned up with room to spare.  I screamed with frustration when I missed the doctor's call, and their office told me to call back after checking my voice-mail so they knew who to transfer my call to.  It figures that I got locked out of voice-mail and couldn't figure it out, so Adam called.  I couldn't do it.  Just saying the words when I first called this morning were painful enough.

I know that this won't last forever...I'll start to feel better.  Eventually I won't be constantly reminded of it.  For now though...I need to cry.  I need to shout.  I need to hold my little girl and tell her how much I love her.  I need to spend the day in my messy pajamas, doing nothing but hiding in my bed and watching tv.  

To those of you that have reached out to us, thank you.  It means a lot to us, especially since things like this so often are brushed under the carpet.  Thank you for acknowledging our loss and how much we already loved that little baby. 

The Serenity Prayer

The Serenity Prayer

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
--Reinhold Niebuhr

Monday, May 30, 2011


Writing this blog has given me an outlet for what has been a very difficult few years.  This Memorial Day weekend should have been a time for enjoying time with my family, and remembering the huge sacrifices our military families have made.  Instead, I've spent much of the past two days in the hospital, crying my eyes out.  If you are squeamish, please don't read this.  This isn't "polite" conversation, and frankly, it is time that it changes.  So common that hushed whispers and secrecy do not suffice.  

After years of trying, Adam and I found out that we were expecting a few weeks ago.  With so much that has gone wrong the past few years, this was something so right.  Emma found out as well, and she was so excited that she told EVERYONE she talked to about it.  She was having a sister, she said.  We told her that she'd have to take what she got, because God isn't a short order cook.  Four days ago, she asked me if the baby was going to die.  I told her no, of course not.  In retrospect, I started to feel "off" that day.  

I woke up Saturday with my pants soaked with blood.  The shock of it made me retch and almost pass out.  My vision narrowed, my brow was sweating, and all I could do was yell for Adam.  We rushed to the hospital, and I knew in my heart that it was over.  I spent a few hours getting poked and prodded, only to get inconclusive results.  I had to get an ultrasound, and Adam wasn't allowed to stay with me.  My HCG levels were very low, and the ultrasound showed no gestational sack or fetal pole.  The nurses and doctors were respectful of my emotions and were caring...but they told me that all we could do was wait and pray.

Sunday morning we told Emma that the baby most likely died, and that we would try again when we were ready.  She was sad, and she held me so tight.  We hadn't been to the fairgrounds to see if my pictures placed, so we decided to get cleaned up and get our minds off of it.  Emma brought along her "BFF".  Since the fence fell down, she has been close with the little girl behind us.  Adam packed my scooter in the car, and off we went.

I was in a daze, and it seemed like every woman I saw was carrying a baby or was pregnant.  Funny how things stick out like that.  We found my photographs, and by surprise, I did place.  I expected my photo of a mallard duck to place, and didn't expect to place in the portrait category.  The result was actually the opposite - I placed third in portraits and didn't place in the animal category.  Either way, that was good enough for me.  I won a whopping $5.00 and a couple pretty ribbons.  

We wandered around for awhile, and the cramping got worse very quickly.  The girls wanted to shop, and instead of getting junk at the fair, we decided to take them to the Disney store at the mall.  The pain went from bearable to something like being repeatedly punched in the gut just from scooting around the mall.  After they spent their piggy bank money and we had some ice cream, we had to go home.
I crawled into bed, and the pain was horrible.  I realized I was running a fever, and I knew that we had to go to the ER again.  That was the last thing I wanted at that moment.  I wanted my bed, I wanted sleep, and I wanted this to be over.  We sat at Mercy for hours waiting for my lab work to come back.  Every few minutes a young couple came in with a young child or baby that was sick, and I couldn't help but think about how this was ending for us.  Their little cries made me cry.  I love Emma so much, and more than anything, I want her to have a little brother or sister.  I thought that after years of trying to figure out what was wrong with my muscles, and well over a year of trying to get pregnant, that this would last.  This would be it.  It would be real.

My HCG levels dropped from 117 to 80 instead of doubling like they should have.  I didn't need the doctor to tell me.  I knew what that meant.  I knew that also meant that I'd have to wait for my body to let go of this pregnancy.  The doctor also thinks that I have a bladder infection and possibly a pelvic infection.  She gave me pain medication and antibiotics, and took some samples to culture.  

Tomorrow is a holiday, and I can't call my doctor until Tuesday.  To make matters worse, I haven't even seen this doctor before.  I was switching doctors since my old doctor is too far away.  I don't know what this doctor is like. Will she be caring and gentle like the doctors at the hospital were?  Until then, I have to labor in a way that just shouldn't happen.

My heart is broken.  Part of me died with that little soul that was inside of me.  I used to volunteer by providing bereavement items for families at the local maternity ward.  I never imagined that I would be in their place.  I know that for us, we need to acknowledge this pregnancy.  We need to acknowledge this little soul that was so very real to us.  Since we'll never know, we decided to give this baby a name that works either way.  Avalon is my great uncle's name, but it is also plays a pivotal role in the stories of the holy grail and King Arthur.  So, Avalon it is.  Our angel baby.

I wish I could have met this sweet baby.  I know that someday, this will happen for us.  We'll grow our family, by birth or by trying to adopt again.  Please say a prayer for us.  


Friday, May 6, 2011

Using Henna - Part Two

If you are new to henna, it is a good idea to do a test before putting the gloppy stuff on your head.  The easiest way to do this is to collect hair from your brush.  The minimum amount of time is usually an hour or two, though some choose to wrap their hair in plastic and sleep with henna in their hair.  I usually allow for 2-4 hours.  I recommend splitting the hair from your brush into three piles if you can.  Cover in henna and some plastic to keep it wet.  Then rinse one section after two hours, another after three hours, and again at four hours.  This should give you a good idea of the color you'll get with each passing hour.  The first time you dye using henna, it is easier to have someone else applying the dye.  Henna is similiar to mud in consistency, and it helps to have another set of hands.  I also like to have someone check my neck and ears for any henna smudges.  (Henna will stain your skin for a few days if you don't wipe it off.)  Once you are used to using henna, it can easily be applied by yourself.

I recommend Henna for Hair for their great resources, as well as their store.  Henna for Hair sells body art quality henna that is guaranteed to be free of any additives.  They also have a wonderful mixing chart if you are looking to achieve a color other than red. 

Here is one method to mixing and applying the hair dye:

This video shows how henna deepens after the dye process is finished.  It starts as a more brassy orange, but after a couple days, it is a rich red.  You can reapply henna to get rid of the orange in your roots, or just wait a couple days.  The hair color shown in this video is very close to the color I get using henna.

Igi V

While we were researching and preparing for my first round of IVIG, I found a therapeutic play kit for children with Primary Immune Deficiency.  The makers of the play kit happened to be Baxter, the manufacturers of GammaGuard, which is also the infusion I received.  Stiff Person is rare - only around 1 in 1 million are diagnosed.  The actual occurrence might be higher, especially since most doctors have had to look it up when I've mentioned it.  I have had to find resources where I can, and PID is much more common.

Anyways, I figured that the kit would be a good idea for Emma.  She has been with me for blood draws and has been more curious than anything.  The prospect of her seeing me tied up to an IV drip and not feeling so hot bothered me, though.  I would rather her feel prepared and understand how Mommy's treatments work.  

 Here's what Baxter has to say about the kit:

"This one-of-a-kind resource helps families learn to cope with the medical environment through therapeutic play. The kit contains Igi V., the Therapeutic Play Doll, a storybook for children, a guide for parents, real medical equipment, and Igi V’s Medical Records Activity Journal in a convenient bag for easy travel.

Developed for Baxter by Certified Child Life Specialist Adina Bodolay and a family living with PI, this new resource can help families:
  • Learn strategies to cope with the medical environment
  • Gain a better understanding of medical procedures including IV starts, CT scans, and blood draws
  • Express thoughts and feelings about living with primary immunodeficiency
  • Educate siblings, children or grandchildren of adult PI patients, as well as children with PI"

The kit came in the mail today.  It includes Igi V, the play therapy doll.  Also included are books for the parents and children on IVIG therapy, and a kit with real medical supplies.  (Needle, tubing, bandages, you name it.)  I'll have to read up before I bring up out the doll, but I think that she'll enjoy it. 

The only downside is that because they are real medical supplies, the child must be supervised at all times.  Baxter could have created a blunt needle that went into an open "vein".  Oh well - the kit was free and it is much appreciated.  It also bothers me a little that they have plenty of money to send free books, infusion tracking packs, and play therapy kits...all because the cost of the medicine is outrageous.  One infusion costs around $12,000, depending on your weight, diagnosis, and location.  

When we bust Igi V out to play with, I'll make sure to get some pictures. :)

Thursday, May 5, 2011

Using Henna - Part 1

I have tried all sorts of hair coloring, dyes, etc.  My hair is mostly straight, but some is wavy and a small portion makes tight, kinky curls that are impossible to comb down or flat iron.  Before finding henna, I noticed that Joico's Kpak helped a lot with keeping my hair manageable.  I decided to try henna on a whim, and I LOVE the stuff.  It is a natural dye, and there is some reluctance when most look at natural dyes. 

Henna is a plant (Lawsonia inermis) that is commonly grown in India, Africa, and Arabic countries.  While stores carry brown, black, and even blonde "henna", real henna only dyes orange or red, depending on your hair color.  Colors other than red are made from other plants dyes like cassia and indigo.  Henna adds protein and shine to hair, and if used weekly, it can help release curls. 

If you choose one of these other colors, make sure to get a body-quality dye.  Cheap dyes may contain other ingredients that could cause reactions.  I get my henna either from a health food store, or in bulk from an herb shop in Rancho Cordova called Starwest Botanicals.  In the mix below, I am using cassia and henna.  This would provide a light red dye if it were your first time.

- Measure out your henna if you did not buy a kit.  Four ounces of powder will completely coat my medium length, thick hair. I prefer to mix the henna in a disposable plastic container, or a plastic bag.  (You can use whatever you like, as long as it is not metal.)  Cool trick - if you use a ziplock-style bag, wrap it in a white paper towel.  When the towel starts to turn orange, your dye is ready to go.  Otherwise, you will notice a brown layer on top of the henna mixture.

- Wet henna has an earthy, plant-like scent.  My husband likes it, but my daughter thinks it smells like dog.  If you don't like the smell, feel free to add some cinnamon, cloves, lavender essential oil, etc.  

- To aid in the dye release, I add apple cider vinegar and the juice of a lemon.  You do not need to add an acid to the mix, but it does speed up the prep time.  If you are sensitive, you can use orange juice instead of lemon.

- Mix in the apple cider vinegar and lemon.  The mix will probably be pretty dry at this point.  You will want to add warm to hot water.  Make sure to not boil the water - that is too hot.  Keep adding and mixing until it takes on a yogurt-like consistency.

- Cover your container, and wait for the dye to release.  I usually let it sit overnight, but it may need to sit longer if it is cold in your house.  Some brands release dye in just a couple hours, some take two days.  I recommend allowing for a day or two the first time.  If the dye is ready and you'd like to dye at another time, you can store it in the fridge for a few days, or the freezer for six months or so.

Part two - coming soon!

*I realized after the fact that I used a metal spreading knife to mix the henna.  Whoops!  It will turn out okay, but avoid metal if you can.  If too much metal gets in the mix, it can turn you hair green.

Wednesday, May 4, 2011

Summer in 0-60 Seconds

It seems that California really only provides us with two "real" seasons - summer and winter.  Spring and autumn are nothing but a passing glimpse of comfortable temperatures.  We had an unusual winter season this year that lasted up until this past week.  Before going to the infusion center, I had to bundle myself up so that my veins would not play peekaboo at the worst possible time.  Now?  My plants are wilting and I am hiding inside with the air conditioning running.  

Don't get me wrong - I appreciate summer for the bountiful harvest and beautiful flowers from my garden.  I just do not like the heat.  If I had my choice, I would live somewhere a little bit cooler.  My favorite spot is off the Coast, across the Bay and south of San Francisco.  I doubt my roses and tomatoes would enjoy the move, though.  My budget most definitely would not survive the move. 

This year's garden includes several different varieties of tomatoes, lemon and canning cucumbers, a few types of summer squash, corn, beans, sugar pie pumpkins, potatoes, herbs, walking onions, and a mystery cucurbit that popped up under a couple of rose bushes.  If I can find the space, I'll plant some spoon gourd seeds that my mother in law brought back from Arizona.  At least I think it was Arizona...she travels a lot as a very special agent for the Feds.  :)

With so many roses, I suddenly have a HUGE aphid situation.  Normally I use companion plants and organic immune boosters like kelp to help the problem.  This...this is a full-blown situation, though.  I found aphids on my squash plants, and I am pretty sure that is a first.  The freakish weather also brought powdery mildew to the more susceptible plants.  I had to create a spraying schedule, and hopefully the foliar feeding and Organicide treatment will work.  

If you happen to find a bag of squash and tomatoes on your doorstep in a few weeks, it wasn't me. ;)

Monday, May 2, 2011

What happened to Plan A?

I sometimes wonder what life would have been like if I hadn't gotten sick.  What would that have been like?  My dream was to finish school, majoring in art or possibly horticulture.  I love photography, gardening, and landscape design.  I probably would have a successful career and a couple kids by now.  I'd have a modest house with a nice, big yard and old shade trees.  I'd probably still play soccer when I had time.

Life doesn't always go according to plan.  After hearing a moving sermon during church yesterday, I knew I had my subject for today.  The church I had gone to since birth dissolved after the pastor retired, and we wandered around looking for something that felt like home.  A few years later, I found a great friend in junior high, and visited her church.  I loved the upbeat environment and the fun lessons we got in the teen group.  I had a couple of great youth pastors that helped me through a tough time in life.  My mom's second marriage didn't work out, I was at a new school, and I started having horrible headaches.  I had somewhere to turn when I started getting ulcers in my mouth, and I was scared when I was being tested for everything from HIV to yeast overgrowth.  The doctor's had seen nothing like it, and that alone was scary.  In fact, I don't think that I told many what was going on in my life, but they knew I was going through a lot.  Eventually, I was baptised with my best friend by the same youth pastors.  We lost touch when the church moved to a much larger location, and I became lost in the busy life of a teen.
Pastor Brian Benton, myself, Larissa Cook, and Pastor Steve Conrad

I decided one day last year to post old photos that I had from that time.  The internet is an amazing thing.  Within a few hours I was reconnected with the group from church.  The youth pastor had started a church of his own, Crosspointe Community Church.  I didn't have a chance to attend services at the time.  My spasms were uncontrolled, and I was having a hard time even getting out of the house.  This Easter, I got another invitation to attend the service, and I knew I had to go.  It felt right.  Even my husband, not raised in church, knew we had to come back, and so it is.  The sermon this past Sunday?  Plan B: What Do You Do When God Doesn't Show Up the Way You Thought He Would?

This morning, I stopped to read the blog of a dear friend.  Her daughter was critically injured almost two years ago, and her blog allows her to let her emotions out and keeps us all updated. On Mondays, she encourages her blog readers to join in. Her topic today?  "I am wondering the difference between what you thought your life would be, and what it is? How do you handle the difference between the two?"

Thank you for the image, Jen!
I am at a crossroads in my life.  There are so many uncertainties that cloud my vision at times.  How will this progress?  Will treatment help stop or reverse some of the progression?  Will I live a long, happy life, or will I succumb to the disease?  Will we be able to have more children?  Will we be able to adopt if that is how we need to grow our family?  I have had to accept that I can't know the answers.  This wasn't my plan...but somehow, blessings have come from this chaos.
-I am learning to bite my tongue when I'm frustrated.  I love my husband, and he doesn't deserve my grumpy attitude when I'm having a rough day.  He loves me unconditionally, and despite my shortcomings.

-I get the chance to spend most days at home with my little girl.  She won't be little for long, and I want to soak it up.

-Even though we no longer own our own home, we're in a comfortable place at my mom's.  It is wonderful that Emma gets to spend so much time with her, and they are best buddies.  Mom helps so much with Emma.  In turn, we do what we can to keep the house maintained and the yard welcoming and relaxing.  

-Our fence blew down, and while that was crummy, another blessing came.  Emma found a new friend, and now there is a kid-sized doorway in the fence for them to go back and forth.

-Even though I probably won't be able to return to work in any sort of normal fashion, I have time to get some college course out of the way.  

-I haven't been able to travel far in a few years, so we've been able to explore the beauty of Northern California.  There is so much to see near home.

-I've found new friends, and it feels like we've known them forever.  

-I have been able to put aside differences and grow a closer relationship with my Dad.  He has been so helpful, especially since this diagnosis was confirmed.

-Even though it was spent in a chemo center, I spent more time alone with Adam than I have since Emma was born.  It wasn't ideal, but that time was precious.  

-When I can, I break out my camera.  Our yard is filled with flowers of all sorts, and they make beautiful subjects.  Not only am I shooting my first wedding this month, but I have also entered a couple photos into the Sacramento County Fair.  (Wish me luck!)

-By the grace of God, I have found a church that feels so right when I needed it the most.  

-I have had a chance to research our lineage, and in short, it is amazing.  My great-grandparents were the kings and queens of England, Spain, France, and during the crusades, my great-grandfather was the king of Israel.  I need to do the math, but I also realized that Adam and I are cousins through the Spencer Family line.  (Don't worry - it is out 15-20 generations or so.)

-Through this suffering, I have become closer to Christ.  I feel empathy and understanding for others that I didn't before.  I consider the challenges a checker faces in their own life before I become frustrated at their slow check-out times.  Do they have a brain injury? A learning disability?  Are they dealing with health issues, or is someone near them suffering?

While Plan B wasn't what we planned on, it very often brings blessings in disguise.  I just had to open my eyes to them.

She always knows how to make me smile. :)

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