Who owns a Rascal? I do.

Last year when things were starting to go down hill and we didn't have a solid diagnosis, we decided to find a mobility scooter for me.  For the past few years I have rented them if we go to places like Disneyland or the state fair, and at $50-$100 per rental, it just didn't make financial sense.  We kept an eye out on craigslist, and found a used scooter in cherry apple red.  

I loved the thing.  However, I noticed that using it, I get even more glares than I do with the scooters in big-box stores.  People act like I stole the scooter from my grandma and decided to be lazy.  Seriously - I have never gotten so many stink-eyes.  

I'd like to fix the scooter up a little since I will probably be using it more.  The front control panel sticker is worn, and I'd really like to make one out of wood veneer.  Breaking out my wood-burning tool would be fun.  It needs some new trim and a little crack fixed, but I'm sure Dad could handle that if I asked.  

Back to the glares.  I decided to show a little of my snarky nature, and add a bumper sticker.  It took me awhile to come up with what I really wanted to say.  Today I did it, and it has been added to my Zazzle store.  Check it out:

I didn't "look" disabled? by classicsredone
See other Disabled Bumper Stickers

Here's what my scooter looks like...except mine came pre-loved.  It is pretty cushy. I just need to get a basket and a drink holder, and maybe one of those shade umbrellas that clip onto the back.  Then I'll be rollin' in style.

Biting at the reins...

The past few days have been beautiful.  The temperature has been around 75-80, with nary a cloud in sight.  Naturally, I am in full gardening mode.  Except...my body does not want to behave.  Last night I got in about five minutes of weeding.  Today, bending over to get a wash cloth locked me up.  I am craving a leisurely shopping trip to Capital Nursery for seedlings and amendments.  I'm also craving the delicious produce that comes later.  The lemon cucumbers, the juicy tomatoes, the sweet bell peppers.  Right now, I'm propped up in bed with an ice pack and even a cocktail of Ativan, Flexeril, and Tramadol isn't making a dent. 

It kills me to see weeds overtaking the flower beds I worked so hard on, but it will have to wait.  If nothing else, God is presenting me with a lesson in how to be patient.  I just need to learn how to be a good student.

a funny thing about life...

They say that God works in mysterious ways.  Sometimes we wonder if He hears us, if our prayers might be answered.  They also say that when you dealing with the biggest challenge you will face in your life, you will either turn towards God or turn from him.  I didn't have to turn...I never left.  It is funny, though, how in retrospect His plan seems so perfect.  When you feel so alone during that trial, the people that stand up and show their love mean so much.  Call it fate, call it God's plan...call it what you will.  Those people are angels here on earth.  I read a story on another site about a whaling captain that I would like to share.

"A good many years ago, I was sailing in the desolate seas off Cape Horn, hunting whales. One day we were beating directly south in the face of a hard wind. We had been tacking this way and that all the morning, and were making very little headway. About 11 o'clock, as I stood at the wheel, the idea suddenly came into my mind, 'Why batter the ship against these waves? There are probably as many whales to the north as to the south. Suppose we run with the wind instead of against it? In response to that sudden idea I changed the course of the ship, and began to sail north instead of south."

"One hour later, at noon, the look-out at the masthead shouted 'Boats ahead!' Presently we overtook four lifeboats, in which were fourteen sailors, the only survivors of the crew of a ship which had burned to the water's edge ten days before. Those men had been adrift in their boats ever since, praying God frantically for rescue; and we arrived just in time to save them. They could not have survived another day." Then the old whaler added, "I don't know whether you believe in religion or not, but I happen to be a Christian. I have begun every day of my life with prayer that God would use me to help someone else, and I am convinced that God, that day, put the idea into my mind to change the course of my ship. That idea was the means of saving fourteen lives."

To those angels in my life, thank you.  I am so glad that we found each other.  Words can not express how blessed I feel to have you in my life.



 

Spring is here!

Spring is officially here!  We haven't had rain in days.  (I'm knocking on wood right now!)  The backyard FINALLY has a chance to dry up, and hopefully we'll get our fence fixed soon.  Last week it came crashing down during a particularly violent storm.  Said storm had me in my neon-pink Crocs rain boots, holding a flashlight and trying to stay dry while I figured out what went crash in the night. 

The next day, Adam and I pulled down what we could and threw the pickets into piles by the shed.  Last night the neighbor behind came over to let us know that he got our letter about why the fence was missing. :)  He is more than willing to pay his half, so that is a huge weight off our shoulders.  Money only goes so far when you are living off one income.  I was also so pleased to know that they are nice.  We hadn't talked to them yet, and the people living in the house before were...weird. 

We also got a ditch started for drainage in the backyard.  For some reason the back third of the house drains on the side, and that leaves the back a veritable swamp.  If we got summer rain, I'd get rain barrels rather than drain it away.  Too bad we get most of our rain from December - mid February.  That is, except this year.  Hopefully after the fence is built, we can finish the drain project and have the side of the house drain to the front lawn. I'd also like to add the downspout that drains into the rose bed to the drainage line.  That would be one-less gardening worry in the early winter months, when mildew can be an issue.  

Our potatoes, peas, and lettuce are doing wonderfully, and in the next couple weeks, we'll have roses blooming again.  I started a compost pile with the few weeds I've been able to pull as well as the chicken bedding.  They'll be going outside soon, so hopefully we won't have nearly as much bedding to worry about soon.  For some reason it creeps mom out to put the bedding straight into the flower beds, so composting it is a must.  My husband is planning on building a nice compost bin out of left over pickets once the other projects are complete.  

I need to make a trip to the nursery now that the rain has let up.  By now I would normally have a full garden started, but Mother Nature had her way.  We love the selection and staff that knows their stuff over at Capital Nursery.  I'll be replanting the bean tee-pee, adding tomatoes and sweet peppers, corn, summer squash, and pumpkins.  I might add some melons if we have the room, but we'll see.  Winter ruined my basil plant, and that will need to be replaced, as well.  In the front rose beds where diseased plants were torn out, I'll plant sunflowers behind the remaining rose bushes.  The bed to the side of that already has blooming iris and poppy plants. 

I do not like the heat during the summer here, but I love the color and fresh vegetables.  Here comes the sun!

Diagosis? What diagnosis?

I was asked to explain what diagnosis I was given, so here is a little information from the National Institute of Neurological Disorders and Stroke.  I do not have anti-GAD antibodies, so the prognosis is a little better, but treatment options are fewer.

What is Stiff-Person Syndrome?

Stiff-person syndrome (SPS) is a rare neurological disorder with features of an autoimmune disease.  SPS is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms.  Abnormal postures, often hunched over and stiffened, are characteristic of the disorder.  People with SPS can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls.  SPS affects twice as many women as men.   It is frequently associated with other autoimmune diseases such as diabetes, thyroiditis, vitiligo, and pernicious anemia.  Scientists don’t yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord.  The disorder is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia.  A definitive diagnosis can be made with a blood test that measures the level of glutamic acid decarboxylase (GAD) antibodies in the blood.  People with SPS have elevated levels of GAD, an antibody that works against an enzyme involved in the synthesis of an important neurotransmitter in the brain.

Is there any treatment?

People with SPS respond to high doses of diazepam and several anti-convulsants, gabapentin and tiagabine.  A recent study funded by the NINDS demonstrated the effectiveness of intravenous immunoglobulin (IVIg) treatment in reducing stiffness and lowering sensitivity to noise, touch, and stress in people with SPS. 

What is the prognosis?

Treatment with IVIg, anti-anxiety drugs, muscle relaxants, anti-convulsants, and pain relievers will improve the symptoms of SPS, but will not cure the disorder.  Most individuals with SPS have frequent falls and because they lack the normal defensive reflexes; injuries can be severe.  With appropriate treatment, the symptoms are usually well controlled.

What research is being done?

The National Institute of Neurological Disorders and Stroke (NINDS) conducts research related to SPS in its laboratories at the National Institutes of Health (NIH), and also supports additional research through grants to major medical institutions across the country.  A study using the drug rituximab proved ineffective in treating individuals with the disorder.  Current research is focused on understanding the cause of the disease and the role of the anti-GAD antibodies.

Step One - Finding a Foundation

If you read this blog, you know that I've been having good days and not so good days.  Some days I'm weeping like a broken water pipe, others I'm happy to be living life.  Dealing with a devastating diagnosis is like stepping into a whirlwind.  Some days I just need to be held, and my husband is there for me.

Don't get me wrong - I don't feel like I'm stuck in a whirlwind of depression.  I'm stuck with trying to figure out what this diagnosis means, and what my path in life will be.  Should I hold off on classes for now, until things are figured out?  Should I drop the goal of an AA and just take classes that are interesting to me? Will we ever have enough income to get a place of our own? (Don't get me wrong - I really, really appreciate Mom letting us stay here.)  Will we be able to have another child?  Will I have the energy for another baby?

I am the type of person that likes to have a plan.  I like to know where I'm heading, where I've been.  In away, this diagnosis is gratifying.  It is evidence that I wasn't a lazy lump all of these years.  I wasn't giving up on school and a fancy career.  I was SICK, and I don't know if others have really realized that yet.  I have accomplished more than many have with the cards I have been dealt.  Accepting that has also been gratifying.  

I've joined a couple online support groups, since none exist locally.  I bought a book on how to deal with a devastating diagnosis.  I'm making an effort to get up and do a little exercise, only if it is to do a few squats or push-ups against the counter.  Anything is better than nothing.  When I need a little cheering up and I'm here alone, I feed the pullets a little treat. Watching their antics would make anyone smile.  

Here's to another day - hopefully a good one. :)

Interviews with my Daughter

Today we're going to take a little detour, and interview my four-year old, Emma. :)

Me:  What do you want to be when you grow up?

Emma: A teacher.

Me: What do you need to be a teacher?

Emma: A teacher's stick, a table, a chalkboard, and some chalk.

Me: What would be the best part about being a teacher?

Emma: Teaching kids. Teaching them how to learn. That is the bestest part.

Me: Do you want to teach little kids, or big kids?

Emma: Uh...Four year old kids.

Me: Why four year olds?

Emma: Cuz, I'm four years old. I'd love to teach four years olds to learn.

Me: What is your favorite color?

Emma: Red and pink.

Me: What is your favorite animal?

Emma: A butterfly.

Me: That's a bug.

Emma: They are NOT bugs. They are insects. They suck pollen.

Me: What do you think about all of this rain?

Emma:  The rain is good for us because we need water to drink, and animals need water to drink.  The streams and plants need water to drink, too.  It is good for using as hairspray because it keeps our hair down.

(dramatic pause)

Emma: Momma- that's all. We're done with the interview. Momma, we're done.

Two post kind of day...

Since this diagnosis, a lot has been running through my head.  I don't really feel depressed, but I'm working through a lot.  Some days I cry at sappy shows, cry because I broke a dish by accident, and then cry some more reading a friends blog.  Other days go pretty well, and I can appreciate what I do have.  I have accepted that things are not going to be as I planned.  I have accepted this diagnosis.  I will not accept that I will wither and let myself die early.  I am going to fight this.  

When I get down, I start thinking about what I can't do anymore...

-My sewing machine is gathering dust, even though I need to sew a blanket for my nephew and want to make dresses for my daughter

-I haven't ridden my bike in so long that the tires are going bad

-I loved gliding along a ballroom floor, feeling like I was floating in the arms on my husband

-I feel like a horrible mother when I can't do something because I am so tired or sore.  I can't walk with my daughter down to the park.  I can't take her every day to preschool.  I can't go to Mommy and Me swimming lessons with her.  

-For some reason, I can't get pregnant.  It wasn't easy the first time, but this time, my body has said no so far.

-I can't look at adopting, because right now, our we have too many unknowns.

-I used to love getting a good work out at the gym.  The rowing machine was my favorite, and now I can't row for fear of locking up my muscles for days.

-I can't go to theme parks, fairs, charity walks, etc. like I used to.  Now I have to do it in a scooter that makes me feel self-conscious, and garners strange looks.
-I long for the afternoons I spent as a child horseback riding.  Sitting high in that saddle while the beautiful horse cantered freed and fed my soul.

I can do some things, though.

-I can sit on the couch and catch up with the friends that I miss so much if they come by the house.

-I can read to my little girl, paint her nails, give her a 'pedicure', talk to her about how school went today.

-I can love my family and friends with all of my heart.  This has made me appreciate those that are dear to me even more.

-I can still craft...sometimes.

-I can write, and it helps.  Writing lets out the tears, but letting out the tears is helping me to accept and understand our new reality.

-I can be there for my friends in whatever way I can, even if it is just to listen.  

-I can curl up with my husband and watch a movie instead of going out for the night.

-I can research this cruel disease, and find the best treatments with my wonderful doctors.  

It isn't all bad, and I see that.  There is sunshine on the other side of this cloudy day.  We are going to call to check on the status of the portacath surgery and IVIG referrals and insurance approvals this week.  

Please pray that the red tape is dealt with quickly, and that we can get treatment going as soon as possible.  Please pray that the IVIG treatments are effective, that I regain some mobility, and that I do not suffer side effects.  Please pray that my family and friends continue to be strong through the Lord.  Thank you. :)

Psalm 23


The Lord is my shepherd; I shall not want.
He maketh me to lie down in green pastures:
he leadeth me beside the still waters.


He restoreth my soul: he leadeth me in the
paths of righteousness for his name's sake.


Yea, though I walk through the valley
of the shadow of death, I will fear no evil:
for thou art with me; thy rod and they staff comfort me.


Thou preparest a table before me
in the presence of mine enemies:
thou anointest my head with oil;
my cup runneth over.


Surely goodness and mercy
shall follow me all the days of my life:
and I will dwell in the house of the LORD forever.

Happy birthday Ryann!

March brought another birthday.  My youngest niece, Ryann, turned five today!  Five is such a bittersweet age for a momma.  They aren't babies anymore.  At five, they're already in or will be in kindergarten soon.  They start growing taller, they lose that baby fat, and they look like such big girls. As much as us moms wish they'd stay little, they have to get big.  My little one will be five in just a few months.  I hope that Ryann had a great birthday!  She seemed like she had a lot of fun. :)

I even got a chance to cuddle up my cute little nephew, Seth.  He's a little over five months now, I think.  It makes me so happy to hold the little guy, but I have to hold back the feelings of baby fever in my heart.  I don't know if we need to wait awhile right now, or if the IVIG might actually help...I really just don't know a lot right now.  But I digress...

Here's the happy birthday girl and with her sister Maggie on the left, and cousin Angelina on the right. 

And my brother-in-law, Jeremy, goofing off with his crutches. :)

Adam trying in vain to get the chocolate off of Emma's face.  (Btw, she got a new haircut today! More on that later.)

One of my favorite pictures, of Emma, Jacqui, and Seth cracking up.

Someone was ready for a nap.  By that point, I think I was ready for a nap, too. 

I have a LOT of pictures to go through still.  Check my Flikr later this week for updates.

Award

Jen from The Long and Winding Road gave me this Stylish Blogger Award!  Thank you, Jen.  You know that I love your blog, too!

The rules of the Stylish Blogger Award are:

Thank the person who gave you the award and link back to them in your post.

Share seven things about yourself. 

Award seven recently discovered new blogs.

Contact these bloggers and let them know they've received the award.

So...7 things about me:

1.) I used to sit on our front porch as a kid and sing Beach Boys songs.  I'd imagine I was off on a tropical vacation.

2.) I don't really know where college will take me.  For now, it is keeping my thoughts on something positive, and that is okay.

3.) When I have some spare time, I volunteer to transcribe historical records.  Things like census data and birth certificates.

4.) I really miss horseback riding.  When my horse would canter, I'd imagine I was flying through the clouds.

5.) I admit to eating cookies for breakfast on occasion...especially when Girl Scout cookies are available.

6.) For some reason, I've always felt like I had a twin at some point.  There were no regular ultrasounds back then, so a vanishing twin is a possibility. (I know, it is strange.)

7.) You can't tell it be the current state of my room, but I love to organize.  When I have the energy, things can lean towards OCD. I love my label maker. 

The seven blogs I am giving this award to are, in no particular order:

Jen at One Butt Kitchen

Nicole at Bevin's Adventures with Juvenile Rheumatoid Arthritis

Bentley at Red Worm Composting

Raspberry Kidz


Holly at Easy Living the Hard Way


Orren at Happy Chickens Lay Healthy Eggs


The Bishops at Homegrown Goodness


Love your blogs. Enjoy!

Happy birthday Jacqui!

Twenty eight years ago, my partner in crime was born.  She didn't know it yet, though.  I don't exactly remember meeting her, but then again, I was only about six weeks old.  

That little girl grew into a beautiful, caring, inspirational young lady.  She is the kind of person that I could call at 3 am and she'd be there for me.  I'm proud to call her my cousin and friend. Happy birthday, Jacqui!  Now let's eat some corned beef!

Ouch!

I woke up this morning to a sore, swollen hand.  After getting poked three times in the hand and once in the elbow, I expected to be a little sore.  As the day went on, my hand got more swollen.  Then I noticed my arm swelling.  After awhile, my hand started to get red.  Then the read started to streak down towards my elbow.  Uh-oh. 

So, as soon as Adam got home, I showered and we headed to urgent care.  (Did I mention how much I love that our insurance charges a normal copay for urgent care?  Love it.)  The doctor took a look at it, and said that it looked like either a chemical reaction from a little bit of infiltration, or the beginnings of an infection.  He gave me a brace and a prescription for strong antibiotics.

When we got home, I noticed that the redness had gotten worse.  Adam called urgent care back to check on it.  The nurse heard the chicks in the background, and asked if I had handled any of the chicks since the IV.  I had, and apparently that upped my risk of infection.  Since then, the redness has gone down though.  I have switched the brace for more comfortable coban, and hopefully the swelling will be down in the morning.  I think we dodged a serious bullet on this one. 

By the way, our chickadees have names now.  They are in no particular order: Bennie (Short for Eggs Benedict), Minnie, Jelly Roll, Millie, Nugget, Light Bulb, Snowflake, and Sprinkles.  They are getting HUGE!  In a couple weeks, they'll be outside enjoying the grass and spring weather. 

Wait six hours, and then wait three more.

Last night was an exercise in patience.  After a week and a half of struggling with smaller spasms that felt like muscle tissue was ripping and tearing, Adam said it was time to go to the hospital.  I have to go to a Mercy hospital because my neurologist is the big neuro guy for Mercy in this area.  At about six PM, we rolled up to Mercy San Juan.  We saw everything last night...but mostly it was just sick people with the flu.

There was the girl with what I think was an infection from her insulin pump.  The lady with what looked like either acid burns or horrible psoriasis on her feet.  The five day old baby that was constipated.  The teenager with something that went through his lip...not sure what, but there was a police report.  There were four or five pregnant women with emergency symptoms, and an IVF patient that suffering bleeding, possibly from implantation or a loss.  Two women came in after swallowing bottles of pills and were placed on involuntary holds after they had their stomachs pumped full of charcoal.  Several little kids had high fevers.  I saw the same ambulance drivers several times as they brought in everything from heart attacks to lonely elderly folks.  I figured that prayer was a better way to spend time than staring at a wall, so I prayed with all of my heart.  I prayed for each of those patients. 

I quietly dealt with the pain for a long time before I started to cry.  Luckily the nurse noticed, and got me my regular medicine and some percocet.  It cut the pain enough to deal with another couple hours before I was crying out of pain again.  Somewhere past 2 am, I got a bed and a sweet, kindly doctor and nurse that got me out of pain.  It took one stick for blood and three painful sticks to get an IV line started.  My veins are toast and when I mentioned infusions, the nurse told me to ask for a port-a-cath.  We rolled into the driveway when Mom was waking up for the day.

Adam and I got a little sleep before Emma got up for the day.  Unfortunately, one of our Barred Rock chicks ate something hard, and we lost her.  Emma found her and was so upset.  Explaining why it was not a good idea to immediately go and buy another one was lost on a four year old.  Little pepper will be buried with love and respect.  She brought joy to some dark, dark days.

Adam called my neurologist's assistant, and we got some updates.  Plasmapheresis is out because I don't carry anti-GAD antibodies.  We are waiting on my insurance company to approve IVIG, and that could be a couple weeks.  I'm off the Valium for good, and the Ativan has been switched to three times a day.  I have some Norco in case Tramadol doesn't manage the pain.  Because neurology hasn't ordered a port-a-cath in awhile, I've been referred back to the rheumatologist to get one put in.  We aren't sure now long it will take to get the port in, and get IVIG approved and scheduled since this is such a rare situation.  I pray to God that it will be soon, and that it will be helpful.  Last night was if nothing else, a lesson in patience and humility.

After dozing for a few hours, we took Emma to get some breakfast.  Having a happy face pancake with whipped cream and sprinkles made her forget about little Pepper for a few minutes.  Then we took her to Goodwill to find some cute new Summer clothes, and a few books for all of us.  Then it was back to hibernating for me. (Or sleeping off the loads of percocet, ativan, dilaudid, and benadryl.)

If you're the praying type, please send out prayer for healing.  My mom is having back/neck issues, and I need the Lord's help to get through the next few weeks.  Please also pray for those affected by the disaster in Japan.  May they all be comforted by His healing and love.

Are you prepared for an emergency?

Preparing for emergencies is something most of us forget about.  Here in Sacramento, our biggest concern is flooding.  No matter your area, emergencies will happen. It is just a matter of when.  Make sure you are prepared by making the following items accessible in your home.

Please make sure that you have enough emergency supplies in your home, as well.  Here are some items recommended by Ready.gov to keep on hand in case of emergencies:

• Water, one gallon of water per person per day for at least three days, for drinking and sanitation
• Food, at least a three-day supply of non-perishable food
• Battery-powered or hand crank radio and a NOAA Weather Radio with tone alert and extra batteries for both
• Flashlight and extra batteries
• First aid kit
• Whistle to signal for help
• Dust mask, to help filter contaminated air and plastic sheeting and duct tape to shelter-in-place
• Moist towelettes, garbage bags and plastic ties for personal sanitation
• Wrench or pliers to turn off utilities
• Can opener for food (if kit contains canned food)
• Local maps
• Cell phone with chargers, inverter or solar charger 

Also consider gathering the following items in a ready-to-go bag:

• Prescription medications and glasses
• Infant formula and diapers
• Pet food and extra water for your pet
• Important family documents such as copies of insurance policies, identification and bank account records in a waterproof, portable container
• Cash or traveler's checks and change
• Important family documents such as copies of insurance policies, identification and bank account records in a waterproof, portable container. You can use the Emergency Financial First Aid Kit (EFFAK) - PDF, 277Kb) developed by Operation Hope, FEMA and Citizen Corps to help you organize your information.
• Emergency reference material such as a first aid book or information from www.ready.gov.
• Sleeping bag or warm blanket for each person. Consider additional bedding if you live in a cold-weather climate.
• Complete change of clothing including a long sleeved shirt, long pants and sturdy shoes. Consider additional clothing if you live in a cold-weather climate.
• Household chlorine bleach and medicine dropper – When diluted nine parts water to one part bleach, bleach can be used as a disinfectant. Or in an emergency, you can use it to treat water by using 16 drops of regular household liquid bleach per gallon of water. Do not use scented, color safe or bleaches with added cleaners.
• Fire Extinguisher
• Matches in a waterproof container
• Feminine supplies and personal hygiene items
• Mess kits, paper cups, plates and plastic utensils, paper towels
• Paper and pencils
• Books, games, puzzles or other activities for children 

Hope in an IV bag

The past week has been tough.  I've spent much of it in bed, curled backwards from the spasms.  I alternate between sitting propped up on pillows to laying on my side and hugging my body pillow.  My heating pad has been my best friend.

Last week the doctor started me on a trial of Valium.  It hadn't worked when I tried with in the past, but things can change, so I agreed to try it again. Valium lasts longer than Ativan, so it is preferable in that sense.  On a tiny dose of Valium (only 2 mg) I was feeling like a zombie.  I didn't want to eat, I didn't want to drink much, I didn't care to do much but lay there.  I was exhausted but couldn't sleep.  Adam tried calling the doctor but couldn't get through.

Today we got through to the on call doctor, and he said to go off the Valium.  He knew exactly what I was talking about by feeling like a zombie - he had had the same reaction to the medication.  So for now, it is Ativan, Flexeril, Tramadol, and Benadryl if i need it to sleep. He also mentioned that the doctor put in a request for approval on IVIG and plasmapheresis.  We did our own homework and it is covered, but we still need approval for the expensive treatments. 

So, somethings are better, others are in a sort of stasis.  I am not sure if I can finish this semester, or if I need to file for an incomplete.  I'm going to really look at it tomorrow to make a decision.  If I do go through with either of the infusions, I may not have the energy for the first few rounds, and I'll need the rest.

If you're the praying type, please pray for the healing that my body needs.  Prayers are also requested for my brother in law, who is suffering from a nasty skin infection.  Last but definitely not least, please pray for those affected by the earthquake and subsequent events and damage in Japan.  What a horrible tragedy. 

An open letter to family and friends...

Having SPS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not know even a little about SPS. In the spirit of informing those who wish to understand, these are the things I would like you to understand about me before you judge me:

SPS causes painful, unrelenting muscle rigidity and spasms.  I have had doctors gasp and tell me that my muscles are “stiff as a board.”  If I am fatigued, stressed, or get startled, the rigidity turns to painful spasms that can last for hours.  The tightness in my neck and shoulders causes headaches that often turn into migraines that can last for days.  The treatments include drugs like Valium, Ativan, muscle relaxers, and pain killers that leave me sleepy.  Other treatments are expensive and exhausting and include IVIG infusions and plasmapheresis.  Eventually, I will most likely need a wheelchair and may see joint deformity.  Luckily, this condition is not passed down in families.  I do not know why I was given this challenge.  I do know that I am fortunate to have found an excellent group of doctors to follow my care.

Please understand that being in pain doesn't mean that I am not still a human being. I have to spend most of my days in incredible pain and exhaustion.  If you visit I probably don't seem like much fun to be with.  I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about your life too.

Please understand the difference between "happy" and "healthy". When you've got the flu, you probably feel miserable with it, but I've been in pain for years. I can't be miserable all the time, and in fact, I work hard at not being miserable. So if you're talking to me and I sound happy, it means I am happy. That's it......it doesn't mean that I am not in a lot of pain, or I am not extremely tired, or that I am getting better or any of those things. Please don't say "Oh, you sound better!" I am not sounding better. I am sounding happy. If you want to comment on that, you're welcome to do so.

Please understand that being able to stand up for 10 minutes doesn't necessarily mean that I can stand for 20 minutes or an hour. Just because I managed to stand up for 30 minutes yesterday doesn't mean I can do the same today. With many diseases you are either paralyzed or you can move; with this one it gets more confusing.

Please repeat the above paragraph substituting "sitting", "walking", "thinking", "being sociable" and so on.....it applies to everything.

That's what SPS does to you.

Please understand that SPS is variable. It’s quite possible (for me it’s common) that one day I'll be able to walk to the park and back, while the next I'll have trouble getting to the kitchen. Please don't attack me when I'm hurting by saying "but you did it before!" If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute. If that happens, please do not take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me much worse. Another statement that hurts is "You just need to push yourself more, work harder..."SPS includes malfunctioning nerves and muscles, and our bodies don't repair themselves the way yours do. Pushing myself can do far more damage than good and could result in recovery time of days, weeks or months.

Please understand that SPS may cause secondary depression (wouldn't you get depressed if you were hurting for months and years on end?) but it is NOT created by depression.

Please understand that if I say I have to sit down/lie down/take pills now, I have to do it RIGHT NOW--it can't be put off or forgotten just because I am out for the day (or whatever). SPS does not forgive.

Please understand that I don't want you to suggest a cure to me. It’s not because I don't appreciate the thought, and it’s not because I don't want to get well. It’s because I have had almost every one of my friends suggest one at some point. At first, I tried them all, but then I realized I was making myself sicker, not better. If there were something that cured, or even helped, all people with SPS would know about it. This is not a drug company conspiracy; there is worldwide networking (both on and off the Internet) among people with SPS, and if something worked we would KNOW. If, after reading this, you still want to suggest a cure, then do it, but please don't expect me to rush right out and try it. I'll take what you say and discuss it with my doctor.  

In many ways I depend on you -- people who are not in pain. I need you to visit me when I am in too much pain to go out. Sometimes I may need you to help me with the shopping or the cooking. I may need you to take me to the doctor or the physical therapist.  I need you to not be afraid of what to say or do.  Just letting me know you are there for me can mean so much.  Some days what I really need is a hug.  You're my link to the outside world.

And as much as possible, I just need to be understood. 

Feeling Blue

I've been down in the dumps this week, and you know what?  That is just fine.  Sometimes you just need to take ownership of mild depression and allow yourself to be blue.  Accepting that you are hurting and allowing yourself to work through it is a heck of a lot healthier than ignoring the pain.  

I have a lot on my mind lately.  Luckily I have the best husband and doctors I could ask for at this point, and I have a big family and group of friends to turn to when I need it.  I really don't know what my life will look like a year from now, let alone five years from now.  

For now, my neurologist is observing my condition while treating the symptoms the best that we can.  I was switched to Valium from Ativan since it is longer acting, and the dose will be adjusted accordingly.  He also gave me a prescription for Tramadol, the pain medicine that the last neurologist made me stop taking.  Her excuse? If you're on pain medicines now, what do we use later when it gets worse?  You use STRONGER medication, you dolt!  Tramadol is a good choice in this case because it is not addictive and I do not have side effects while on it.  It allows me to live a much more normal life.  

My doctor also is supportive of me filing for disability again, so we are prepared to walk that road again.  Hopefully having his support will make it a little easier this time.  I also have a much more serious diagnosis, which is beneficial for benefits...but crappy in real life. 

I'd like to get away with Adam for a couple days.  I need to dig my feet in the sand and let my soul be free.  We'll see...

Answers?

After we drop Emma off with my dad, Adam and I are heading downtown for an appointment with my neurologist.  I hope that we can get some more answers, and a treatment plan.  I have in my mind what I would like to try, but it is up to him and the insurance company.  So far we haven't had an issue getting any tests or treatments approved, but I'm praying that it stays that way.  Here's to a good appointment, and hopefully a treatment that helps.  

My best friend...

I think that it is time to praise my best friend, my dance partner, my love.  Somehow it was in God's plans for us to meet at the most boring workplace I've had the pleasure of working at.  That meant a lot of conversations to fill the time.  We became fast friends, and eventually, we became a couple.  

He loves me unconditionally, no matter my flaws.  His eyes still light up for me.  He may not be a hopeless romantic like myself, but in all honesty, that is okay.  He is the best father I could have asked for.  He loves our little girl with all of his heart and soul.  He would do anything for us, without even a question.  Lately he has had to play chauffeur and advocate for me when I am not able.  

For that, I thank him.  I thank God for meeting him. I love him with all of my heart and soul. Love you, Baby!

questions...

This past week has left me with more questions than answers.  Will this progress?  Will treatment help?  What kind of treatment should I go for next?  Will I be able to work again?  Should I reapply for disability benefits now, or wait?  Will I have a normal life expectancy because I do not have the anti-GAD and anti-amphiphysin antibodies?  

My next follow-up isn't for another month.  I think that I'll call the doctor's assistant to see if we can get the ball rolling on treatment before then.  I think that I'd like to try ivig and/or plasmapheresis, but I have horrible veins.  Will I need a medi-port?  Not quite sure...but it is a strong possibility.  


 Right now I could really use prayers and hugs and love.  So if you see me, pull me in and hug me.  I'm going to get through this - but I need my family and friends more than I ever have.  I'll let my favorite troubadour play us out...

Confirmation

Today I made the trek back to midtown to see a rheumatologist for a consultation.  My neurologist wanted him to "think outside the box" to see if he had any ideas on what is going on.  Aside from the negative lab work, he feels that this is a pretty textbook case of Stiff Person Syndrome.  That confirms that neurologist's suspicions, and it looks like my next neurology appointment will be to discuss treatment options.  The upside is that since I have had symptoms for years with no diabetes, cancer, or serious autoimmune issues, I am unlikely to develop those comorbidities of SPS.  I do not need to see the rheumatologist again unless the symptoms change and I need to be reassessed.

The treatment options are not fantastic, but they seem to work fairly well in the studies and anecdotal reports that I have read.  The first stop is Baclofen, which wasn't particularly helpful for me.   Next is Valium, which wasn't very helpful.  I have only taken a low dose of Valium, and with SPS the dosage is usually fairly high.  After that is what I am currently on - Ativan and Flexeril. 

Steroids have been effective for me, but I am not willing to risk the long term side effects.  There is no question of IF you will develop side effects with long term treatment. The question is WHEN.  It could be tomorrow, or it could be twenty years from now.  Aside from that, immuno-suppressants can be effective.  As a last resort, plasmapheresis and IVIG treatment can help. 

I can say that I have been nothing but pleased with the doctors and staff at Mercy.  Every person I have spoken with has been warm and caring, and they actually listen.  After getting brushed off by so many doctors in the past 13 or so years, finding a doctor that really listens and cares means so much.  Their billing system is a little wonky, but I'm willing to deal with a little wonkiness in exchange for good care.

Cheep cheep!

Our chicks are officially growing up.  The Barred Rocks are 28 days, and the Hamburgs are 33 days old.  It is amazing how quickly these little birds grow.  Last weekend we found a couple birds out of the brooder.  They were sitting on top of the closed worm bin, looking around like they ruled the world.  We were a behind on the ark project after getting sick, so we had to rush to get the run portion of the ark completed.  The fencing and doors went on, and in went the chicks.  They'll stay inside for awhile longer until the weather is warmer.  

The girls have figured out that I am their food source.  I have to smile every time they follow me in the garage, all while cheeping at the top of their lungs.  I thought dogs could be big mooches...that was until I met these little girls.  I just hope that they ARE all girls.  I am a little worried about a couple of them, but we will have to wait and see.

Here is a video of my little piggies.  They don't seem to like bananas.  More for me. :)