Happy and sad lists AKA need an outlet since I quit facebook

 

 

Things making me sad

 

☹ misophobia ☹ Facebook. ☹ the state of politics ☹ the gaps in the education system from pay gaps to learning gaps ☹ muscle spasms!!!! Why won't, they let go?. ☹ helping a kid with a concussion, new territory for us . ☹ food allergies, picky eaters, eating disorders. ☹ sugar Cravings why cant pie and ice cream everyday make me healthy.  ☹ kids needing help with school work, but refusing to take it. ☹ guilty feelings and guilty emails from Kate's orchestra teacher. ☹ fear of hurting. fear of pain coming back.  Fear of injury. fear of todays pain getting worse and worse and worse tomorrow. fear of not coping anymore, ☹ fitting ABA therapy into our lives happy, even just needing ABA therapy☹ second guessing myself: did i pick the right providers, am i  picking the best time spent on the best resources to help us get through this tough time? ☹ making grocery list, meal  list, family calendar lists. Week after week.☹ doubt doubt doubt am making the right choices for myself for my kids. ☹ pain and fear of pain. ☹ all the wasted fights and time before we figured out Mark doesn't hate reading…he hates fictional stories, but loves science. ☹

. ☹ so much hurt and pain and suffering all over the world and can't see how to help more than prayer. I am barely able to take care of my own family. ☹ feeling overwhelmed. Pain pushing me over the edge. ☹ feeling inadequate in resources time and energy and kindness to help take care in raise my children. ☹ guilt for letting little 12 year old Rachel down for not having the motherhood to experience that I had dreamed of enjoying. ☹ mental health ☹ standing next to kids with mental health issues that cannot disappear with a hug or a pill or advice ☹ feeling helpless as relationships around me fall apart. ☹ can't let go of guilt from the past and fear from the future ☹ extended family relationships that are negative or draining. ☹ picky eaters ☹ calorie counting to fatten up Mark ☹ bad blood work. ☹ taking kids to their blood drawn ☹ protein counting and getting kids to eat it. ☹ sleep apnea ☹ jealousy… Why did they start making cute women CPAP machines after I got mine? ☹ not having time to properly edit  this because it's time to get up and start  Round 2 of breakfast

 

what's making me happy:

 

🙂my family 🙂 my warm sweater and rainbow scarf from my sister 🙂 humor esspecially unicorn related humor

🙂 writing the post and voice recognition software to make it possible to create this While I lay on a hot pack 🙂 my boys, especially when they snuggle. 🙂 Marks adorable slippers 6, Pack Abs and a Cape is awesome on slippers. 🙂 Hamilton, the Musical. 🙂 Kate, sharing my obsession with Hamilton, the musical and also obsession with finding YouTube and podcasts all about it. 🙂 reconnecting with my sisters. 🙂 friendships that just got stronger as everyone helped me when I couldn't drive. It really is awesome, how instead of wearing people out. When I needed help. The most it just made us closer. 🙂 Kates long hair. 🙂 sisters, especially when they're happy together 🙂 Emily's new obsession of taking care of Kates hair 🙂 and Alex is his when it was long. 🙂 dinner and a movie date with grant Saturday. 🙂 the high school being super understanding and helpful with Emily. 🙂 swim team and rock climbing that makes Alex so happy and busy and happy. 🙂 Skype, so I can still talk to my parents easily. Add my dad waking up early and my mom being a night owl. So it's easy to get them despite the time difference in Prague 🙂. Noise cancelling headphones, plates with dividers, cardboard cubbies 🙂 finally finding AR books that Mark likes, since he needs to do ar tests for his grades.  ☹ restaurants that do gluten free. 3 years now, no cheating🙂 Chick Fil, A with there safe French fries and peppermint chocolate chip milkshake. 🙂 Grant finding a team at work to change to that, he loves that he comes home happy and that he enjoys working again 🙂 Emily's recovery and wonderful relationship with her therapists.🙂 school orchestra, Kate Viola, and band, Alex still French horn. 🙂 neighbors and carpools that are helpful and lovely 🙂 being well enough to drive for a large part of carpool. 🙂 driving walking shopping  driving. I can do everything I don't need friends. Driving me or wheelchairs to get around🙂 my back healing on its on its no surgery🙂 friends who drove me around for months, so that my back heel and I could use pain relief medications 🙂 being able to be a full time Mom after having to depend on grants to be mom, and Dad and the kids to do extra work well I recovered. 🙂 feeling safe in my neighborhood in my city in my home. 🙂 extended family relationships that are awesome.  🙂 being understood and valued. 🙂Avazzia 🙂 hugs and back rubs 🙂 our great Christmas 🙂 a great team that supports our health.  We really have found a wonderful set of health care providers and people to make a big difference in our lives and take away the helpless lonely feelings. 🙂 Emilys pretty cpap Machine and the new design "dreamwear" masks. 🙂. French toast soaked in eggs and eggs fried eggs with bacon olives marks trusted foods that he will eat 🙂 hope.  hope in our current paths and in our treatments and our future improvement 🙂 getting to write and edit as much as I did between seminary round of breakfast and school little kids round of breakfast. 🙂 hot pads and Advil.

Today: just words, because who has time to mix photos and story?

Snapshot of today.

I can drive again.

I can take myself and my kids to appointments. 

I can drive carpool for the younger kids, working up slowly. 

I can walk during big shopping trips, or 3 small trips.

I don't have to lay on the church pew or any floor to make it thru a public event.  (I still say thru instead of through because who has time for those three extra letters?  And perhaps I take enjoyment knowing it bothers people)

I can walk.   I can FREAKING WALK!   No wheelchair, no electric scooter.  No breaks on walls, no benches or stools.  I can make dinner and tidy the house in one day, as long as that's all I do. 

I can stay on top of current projects (like Mark's birthday/baptism and Kate's birthday/party)

The den is functional.  Still finishing pieces, like the storage cubby curtains.  But the hammers and drills are put away. 



Today was built on:

Strong husband, who is completely worn out.   Friends who did what my body couldn't.   Family who helped give us a break.  Answered prayers.  Meaning in suffering.  A pounded out chore chart that is fixed, with a system from a friend with a social work background that helps everyone have hope of free time and plan for those who skip their responsibility.  To many doctors, therapists, books, prayers, inspiration, work, work, work, and time.  

but today being good is just today being good (and by today I mean the last 30 days and by good I mean better than last May-Sept)

Today is built on eating clean, and the friends who joined me in this battle.  We've taken over the word kosher to mean anything that is sugar, dairy, grain or starches free.  Paleo/Abascal is close to what we do.  Some of us call it "The Suzan Diet"  because we have the same doc of the same name and we all get the same lectures.  As one friend said, It's too bad this diet works, like really works.  Because it is hard and tastes horrible."   Weight loss is not the goal, but it is a nice side effect.  Lowering inflammation, helping the immune system fight chronic infection, reducing chronic pain,

However, the diet takes planning.  We've found a way to make it fun.  Friends sharing the load, cutting veggies for the week, sharing recipes, texting encouragement (The cake is a lie).   The same group who went out for dessert after kids went to bed are now meeting at the gym or joining forces for veggies.  (Oh, it looks so pretty on veggie day)  That part makes me happy, the friend part.  Because having yet another meal of raw cut veggies and a handful of almonds because you don't have time to cook an egg or defrost soup IS NOT FUN.     Take the I out of Diet and you have "det".  Which is the unicorn word for "friend".  Trust me.  I have a license to know these things.  

The diet does not stop siblings from fighting or your children from telling you how all their work and life problems are your fault.  In fact, in kind of makes it worse because there are no stashes of chocolate to hide behind the bed and eat.  And on that note, Sibling A has been making life miserable for everyone the past hour.   Time to hit send, before I re read, see edits I missed, or tell myself that I need to be afraid to share this much. 

Ways to get rid of lipstick bought in 1996

Its been a rough few days.  Sometimes I feel okay and motivated by holiday lists.  Other times I feel my soul has collapsed into a new black hole in my chest.  I feel like everything I thought and want is being sucked away, and I find myself hunched over.  I have not found their words helpful. I don't know if I'll ever recover.  They say their words were to help.   I do hear what they said, repeated in my head over and over.  .


I'm trying to try to figure out changes outlines in my surgeons book, "Back in Control".  It seems an impossible task.  I vacillate between fear that it won't work and anxiety of what it means if it does work.

I haven't made it much to the gym, part of step one.  However my endurance is being worked out with painting for the new den, and doing more of the household tasks. Its nice not to cry while sorting laundry, or be so spent after making dinner that  I need to rest while the family eats it.   Laundry isn't a huge deal, and I rarely miss a meal because I need to lower my pain.

Point is, I am getting better physically.

So the photo is my attempt to capture the end result of a conversations with my awesome sister Annie.  She has been by my side, talking or texting as the hole expanded. My answer, that has been one as mantra, came while sitting on the cold front porch, looking at the stars.  Yes, a rare winter/fall clear night. 

I had wished that Rachel in 5 years could let me know that this week wouldn't seem so soul crushing in the future. That the work would become easy, as easy and comfortable as eating gluten free (23 months without cheating, BTW). That someday the words and feelings would have purpose in my life that was bigger or better than it felt.  That I would trust the people who said them.  That the page I wrote them on wouldn't cut me like knives.

Until then, I keep repeating the words,

"Rachel, Breath.  One day you will look ♥ back and this will make sense."

Reminder to have peace while waiting

I opened my web browser to find some fluff to read.  I was looking for something to detract me from pain.  I had intended to read others blogs, not have to work at a faith based reading.  Scriptures and church magazines/posts are hard work.  I had intended to mindlessly pass more minutes, maybe an hour, as I wait to feel better.  Lots of work, and lots of waiting have started to pay off.  I can say I am feeling better.  Only 10%-20%, but that is something!   remember, the point is that I have a lot of time I need to rest, to pass painful minutes on my path, and I like fluffy blogs.  But when I opened my web browser, I found it opened to LDS.org, where I had previously searched for a relative.  It was still open, and I scrolled around, impressed that its looking more formal and intriguing.   I saw a link with a title that caught my eye.  Pain. 

While I read it, I felt a warm peace.  I finally am seeing results of my patience.   I saw words that I had said to one of my therapists.   I had said that I've lost my faith that I can get better.  I've learned over the years to not panic at pain flare ups and painful days.  They always pass.  I always come back to calmer days. I eventual get a medical clean sweep, a start to rebuild and attack my life. But this latest disk/Lyme/complicated pain has me emotionally crushed.   I used to emotionally sit back with a curious faith, wondering how God was going to make this better.  Crossing paths with the right new person, remembering a medical advice, tweaking exercise or supplements/meds.  Whatever it is, it always comes back.  However, this leg pain that goes from nothing when I lay down to a slicing pain that I can't push another step, has sucked my soul.  I don't think ill get better.  I think possible complications from surgery aren't worth the possibility of unlimited walking.  And previous to this week, it felt like I was doing so much work with little improvement.  An I was NOT doing a lot of work. I wasn't picking up the house.  I wasn't bending to load my own dish in the dish washer.  I wasn't wedding ny beautiful garden.   And I still wasn't getting better.  So you can see why my hope was fading for a return of pain free walking. 


This debilitating pain  makes walking each step increasingly painful, building with each step. At some point, my leg feels like I was sliced open and filled with concrete.  At that point, I stop.  I lean on a wall.  Corner edges are my fave, pressing right in the spine.  Ahhh, I love a good, firm wall edge to push into my spine.  Or an electric cart, those have given me so much freedom to shop!  As a coinsure of such things, Costco has my favorites.  They can turn on a dime, and have decent speed.  Or a floor.  A glorious, clean, floor.  Or couch. Or bench.  They always make me feel better.  Wait, how did I get on this? 

Oh yes, looking for fluff, I've lost my faith that I'll get better.  And I ran into an article that touched me.  (see link below)

My fav lines

Eventually, I found the peace I needed in James 1. Joseph Smith found his answer in verse 5—mine was in verses 2–4:

"My brethren, count it all joy when ye fall into divers temptations [the Joseph Smith Translation changes "divers temptations" to "many afflictions"];

"Knowing this, that the trying of your faith worketh patience.

"But let patience have her perfect work, that ye may be perfect and entire, wanting nothing."

As I read those verses, I can't say that I was suddenly able to "count it all joy" that I was sick, but I did learn some things that helped me feel less miserable about my situation."

"The fact that I hadn't been immediately healed didn't mean that I didn't have faith, and it didn't mean the Lord didn't care about my situation—quite the opposite, actually. The Lord cared enough to test my faith by not healing me right away so that I could develop patience."

"Elder Maxwell taught: "Patience is not indifference. Actually, it means caring very much but being willing, nevertheless, to submit to the Lord and to what the scriptures call the 'process of time.'"

"Elder Maxwell also taught: "Patience is a willingness, in a sense, to watch the unfolding purposes of God with a sense of wonder and awe, rather than pacing up and down within the cell of our circumstance. Put another way, too much anxious opening of the oven door and the cake falls instead of rising. So it is with us"


https://www.lds.org/liahona/2015/08/young-adults/patience-more-than-waiting?cid=HP_MO_8-10-2015_dPTH_fLHNA_xLIDyL2-4_&lang=eng


Wish I had a nice ending...but im stuck waiting too, waiting for the end of this problem, so I can tie it up I a new paragraph at some.distant year.

(PS, photo is of kids, fighting for who got to shower first this evening.  Seemed appropriate. )
(PPS, realized that they might be embarrassed some day, I took it off)

-o

Right now I am....book, bike and frames

Right now I am sitting in the van, finishing my paperwork.  I meet a new doc tomorrow, meaning I have to recount my history, do the math of how old my 8 siblings are, and describe and draw where, how and why I hurt. 

I hate new paperwork.  Hate it so much that I've been avoiding it for weeks.  So far I've surfed the web for new blogs to follow, directed my daughter and nanny how to arrange and finish a 6 yrs old photo project, and written this blog post.  And that was all today. 

So im waiting in the car while the family, and our friends, go on a post FHE bike ride.  Its marks first time on a tandem riding attachment.  Pretty freaked out, but being brave. 

I meet my new Neurosurgeon tomorrow.  He will decide if we should consider and do surgery.  Or wait more than the past 3.5 months to see if the pain can get all better on its own.  Or all better with his suggestions. 

He wrote a book.  I'm 59% done with it.  Its an easy read...but freaks me out so its hard emotionally to read.   He has a great program he puts his patients on.  Hence the apprehension. 

Okay, need to finish the last pages.

-Rachel

PS, the photo project is so cool.
Top row is each kids kindergarten photo.  That will always stay.  Middle row will be the previous school year.  So it will change every year.  Bottom is current school year.  Easy to rotate and change to the current year.  So glad had helpers who went with my burning desire to get this done...since I had capable hands and a fee morning.   I lay on floor or sat on chair to give pointers or describe what I wanted.

since life gave me lemons...

...Grant bought me new shirts to fit my current body, extra curves and odd shapes from the back brace and all.  

Funny how a little bit of color, a little bit of pretty from him makes happier than being given a bouquet of flowers.  Of course, he is probably excited to regain control of his closet.  Except the purple"spark" shirt.  I like how it makes my PJ's feel more dressy for appts. 

But...on the way home from dropping off my niece at the airport, Grant stopped and got the shirts.  I know he did a lot of digging, and calling, to get the pockets and colors I wanted.  

And the shirts are the first positive thing my heart has seen.  Seriously so sad to see Alena leave.  Perhaps one way I can describe it would be that I didn't realize she was holding together my broken heart until she left.  

Todays reality

Its the 4th of July, and I'm laying in my room, trying to stay warm in the ice box grant has the house set to.

I'm reading other peoples words, bouncing from blog to blog, searching for something to take my mind away.  But I don't find it.  I don't find my life written anywhere. 

I don't see a woman who is very intelligent, but her body is broken.   No, no, wait, she knows that its unhealthy to call herself broken.  She hope that if she tries really really hard, she will walk without pain. 

There are no other blogs of moms trying so hard to hope.  Trying to eat no gluten, sugar, dairy, grain.  Try to mediate positive feelings so that the cells in her body will heal.
Try to move enough to not loose muscle tone.

Try to rest enough to allow the cells to repair whatever the damage is.  Try to remember all the phrases in the therapists office.  Wait, make that two therapists.  Because this could be Lyme, or the disk that showed up on the MRI, or it could be psychosomatic.  

But incase its just blocked Qi, you go to the acupuncturist too.  Maybe then you can try unlock the hidden trauma that is causing all of this.  So hidden that you don't even know you're hiding it,.says the doctors she placed her trust in. 

What you aren't hiding is the extra weight that Lyrica dragged along.  You see the photos, you try to hide it, but its there.  15 pounds.  Looking like 40 because you are trying to see if a back brace would help the pain.  Trying a back brace means that all your extra curves are mashed in the wrong places.  So you try your husbands clothes.  And you try on earrings to feel less ugly when they fit.

Try with your mind isn't enough try, and try with your food isn't enough.  The alarm on your phone reminds you its time to try more.

  Try to take the magnesium because it could help  muscle spasm, the methylated B-12 to heal, the mood stabilizer to prove its not depression.  Those an a few dozen other pills, shots, patches and drops that might help.  Could help.  Should help.  They had better help. 

So there is trying to remember to take the pills, to take them in the right order and spacing.  Setting alarms, snoozing alarms, getting behind.  

Then déjà vu hits.  And you wonder if you've written this before.  You know you've felt this before.  And you wonder why it seems like you've been here before and before and before again. 

Stuck.  Broken.  Lost.
Hearing life happen just outside the bedroom door. 

But you remember you are trying something in here.  You are trying to get better.  So you write this to remind yourself that you are trying to make a better September.  That you are trying to be walking again when the amazing dahlia garden is still blooming around the block.    That you are trying now so in September you can walk with your daughter when she gets her freshmen year photo done.  That you are trying to.....

Ooo, you remember

...there are no words for the feeling when your heart drops, your toes go empty.  Cold sparkling water dumps on your chest.  Your daughter.  Your beautiful daughter, sunny smile, can do attitude.   Your daughter got a sunburn two weeks ago.  A funny sunburn, only on her nose and cheeks.  And her hands and feet.   Then she left for a week at a BYU youth camp (EFY).  And it didn't go away,  turned into a rash.   she came home, we went to urgent care.  Steroids.  Then Monday.   5 days ago.  We saw the pediatrician. Malar Rash. Lupus. 

Lupus.

Lupus.

And you try to take care of your self and look up doctors.  And look up advocate websites.   And you see your visions of a healthy daughter, getting to be the healthy mother you failed to be...you see it crash.  You see the side effects and you wonder what the future will bring.

Sun, sun, go away.  Lupus rash is here to stay.

And you can't tell anyone because you hear what they say about you.  You feel you must be broken or mentally to have broken children.   does anyone believe you, or believe your kids labels? 

Your therapist said your middle name must be Job. 

But Job didn't have friends who brought meals, drove, send encouraging texts and help.chase the negative thoughts away. 

And and Job didn't have fireworks to  hear and see.  



-Rachel

Thanks.for suffering with bad grammar, confusing auto correct. and.extra.periods....touch.screens are not designed for moms typing with one hand and divided attention. If this is not the.case,its your lucky.day

And so the spine goes, again

Anyone who has seen me at church or more in the last three weeks knows that pain has taken over.  And friends who see me more know its bad this time. Even office staff at our doctors see its bad.    This time its only in my legs.  Each week.I can walk less.amd less.before the pain stops me.  Now its 9 steps and I have to pause.   Feels like garden tools are cutting into my outer thigh and calf.  Non of my usual stuff even touched the pain, no acupuncture, massage, PT, even three Marcaine spine injections in one week.   After I colored dots on my leg where it hurt with each step, the doc sent me for an MRI.  He said I had perfectly mapped the nerves from S1 and L5 dermatomes.  Scan confirmed "large disk protrusions and extrusions" at L5/L4, and  "small disk protrusion extended  into the central (nerve) canal".   funny, the large disk issue isn't pushing on the nerves (atleast when I laying down), its the smaller protrusion that is pushing on just the wrong spot. 

Surgery is not an option in my mind.  I've got great docs who will.help.me.get.over this. And a patient and kind.family, despite the bear pain has turned me into.  

Yes, there is a chance its lymes that has caused the inflammation here, and the MRI is showing bad stuff that isn't the root of my problem.  Some people walking around have no pain, and worse MRIs that I do.  And other people who have worse pain and perfect MRIs.  I am hopefully planting myself in the no pain/bad MRI camp.  Its a nicer place to mentally live. 

today at 12ish I try something different to get relief.  I have gone.with everyone's encouragement to a steroid injection into the spine today (very different than Marcaine injections).    this after a week of Lyrica,.an RX for.nerve pain,.that has left my brain muddled.  Its driving Grant crazy, and irritating all my work.  But pain is down 10% on it. The pain is slightly less stinging when I walk.  Again, have to trust docs, do all they say, follow it if it feels right, even if it really sucks.    I don't have time to mess around after these three plus weeks of pain that have impacted everyone and everything. 

And no, I didn't have one specific injury (typical), and I was at the end of one treatment, and then break, then starting another when this started happening.  We have theories, but nothing solid.

So that's all, the long story.

Bright side, sitting and laying down aren't bad, so I intend.to.just enjoy the airport and tour Prague in whatever wheelchairs I can get my hands on.  I have more than a week before I go.   

I have 4 great sisters who listen to me.cry, cheer me up, encourage me.thru one more event/chore. I have awesome.friends and neighbors who have taken some of the burden of family life away.   A relief society pres, who I have admired for years, brought in dinner and FHE treats twice.  Another friend, Kim, watching kids then had us stay for dinner twice.   My sweet VT who just listened to me cry and get all my fears and worries out, and who has taken Alex to driving car time twice.  A new friend, Marrianne driving me to get the steroids today.  A friend Mindy who came over to do homework, and just habjng her her kept me going.   and she swapped laundry loads.  many phone calls from.friends.    I'm.sure I'm forgetting more.     More people offering help, but its hard to see what I can pass on.  My kids do a lot of chores, so we aren't dying like the last time this happened...just overwhelmed

Okay, Mark is crying about not getting a specific apron to wear at breakfast, and I'm hungry too. 

Even if I took time to edit, my Lyrica brain keeps telling me that there are no edits.  And I know its wrong. 

(photos, if I remember, fashion in pain...compression stockings!  So many stories I could tell, but make.a.big difference in my vein related pain)

Shot 💉 homework, burn baby burn

Dr. Cassius, my amazing physiatrist,
Asked me AGAIN to do this seemingly simple, but hard to find time homework.assignment. 

Since the last Marcaine injections he gave me made my pain melt away for 2 days, I felt I had to try.   (left T11, Left Psoas, right into the hip, ouch)

Set a timer for 20 min.  Write every fear, anxiety, worry, frustration down.that you can think of.  No spelling, just write. 

Then tear it up into tiny pieces, or burn.  I burn, because ita more fun, and I feel.more free to write.  I don't want anyone, not even grant, reading about my raw deep fears. 

Let see how many days i can make of the full 2 weeks I promised. 

-

Help us see miracles again

Our family would like to ask for prayers of any kind, and fasting for those inclined, next Sunday, March 29, 2015

Mark, Emily and Rachel recently started treatments for Lyme Disease.  They are expected to take 2-8 years

We have felt inspired to pray that the Lord will guide our family and our doctors to pick the right treatments for complete healing that fit each person's unique situation.

We know that the Lord can do anything.  If it is best for us, we pray that the treatments work quickly to eradicate the Lyme.

If quick isn't the plan the Lord wants for us, we pray that we will be shown the path.  We need peace, strength and hope to see and follow each of the paths we must go. 

Our family has seen miracles happen when those we love are united in prayers and fasting. 

Lyme treatments are most successful when they are rotated.  Each of the dozens of treatment choices take time to work.  We are preparing for many difficult weeks and hope for many good weeks. 

We ask that you keep us in your prays on March 29, and as often as possible over the coming months and years.

We still have much to learn.   Lessons learned from the past show us that physical challenges change when we reach out for prayers.

Thank you for your love and support,

Grant, Rachel, Alex, Emily, Kate and Mark Richins

When Life gives you Lymes...

Hi there,

How are you?  So, it's been a while.   Perhaps too long.   Hey, want to see how the kids have grown?

Yep, it's been a while since I wrote.

 Tough to write when pain and health is up and down.  When I can't bear being vulnerable to an unknown audience.  When I try so many new treatments that help, and get new names, new paths that turn out to be dead ends...or not dead end, but not fixing ends.   It's hard enough to learn, hope, work and fail to get better...but to explain it in a blog post would be misery. 

 

Why the change, why start sharing now? 

 

Because it feels right.  It feels like I should share, and collect hope and prayer to help me on a new name for my same old problems.  And because people I love tell me that my experience with pain has helped others who are in pain.  And I feel better when I read blogs of people who have chronic health, of all kinds.

We have Lyme Disease. 

 

We...

 

Marks test came back positive Dec 2014

Emily's Jan 2015

Rachel Feb 2015. 

 

So what do you do when life give you Lymes?  you make Mojitos.   



 

With friends like these, who needs perfect health?
Mojito Kit (Limes, mint and sparkling water)
from the brilliantly funny minds of Amanda and Kim

Lyme can passed by tick bites ( I had a lot in elementary school), mother to child, and partner to partner.  And Lyme is never just Lyme.  It comes with a whole basket of co-infections.  Party in a bite!

 

We have decided with our doctors, that we won't test the other family members right now.  Its expensive, and we think the burden of balancing another persons complicated treatment would be too much on us, on me. 

 

There you have it.  The latest.   Going out on a limb, covering my eyes, writing this post, telling people who are free to be judgmental, outside my control, outside of my tiny Facebook community, outside my church. 

We are asking anyone, of any faith or belief to pray with us in one week, Sunday March 29.  When I get the words right, I'll post it here. 
 

For now, I better hit publish before I chicken out again.  

Oops! And might as well update

Sorry to get your hope up, or annoy you, with those last 3 posts.  I.have no idea why a direct to blog email got picked instead of my normal email for several group list emails I wrote.  Glad they didn't have anything embarrassing in them.

So, yes, I am alive.  Most of you see me on Facebook.  I still like to write, unpublished newsletters and a private blog I keep for family stuff. 

I still.struggle daily with my health.  I have some.days, weeks, months that I do well.  I've found I have to stay active, workout 3 times a week, stretch daily.  Until injury or a flare up stops me.  Diet also helps, but it doesn't stop flare ups. 

  Right now I just finished a month of modified bed rest, and now I start building back up.  Start is 3 strengthening exercises.  And marcaine trigger point injections.  And pt.  And acupuncture.  Amd chiropractor.  And naturopath minded doctors.  And endocrinologist. 

Summer 2011 I was so strong.  1 month, 5,000 mile road trip.   slowly a rib/diaphragm/shoulder injury/pain took it all away.  Took 18 months to get to the bottom of it.  Doing most of the above.  Getting the trigger points in my diaphragm released was one of the most painful.things I've done. 

Though.the last two months of migraine and severe headaches haven't been a picnic either. 

Sometimes I.chase leads of solutions, ideas, diagnoses, treatments.  But nothing consistently works all the time. 

I've given up.hope of being just a mom, with a body that can do all.the normal mom.things without a thought.  But we make it work with a mom with an unreliable body.  I can drive now, usually without pain.  I sit up in church.  I'm not  constantly on pain meds. 

The kids grew, I did get better than the three years of "illness" this blog represented.   they are 14, 12.5, 7.5, and 5.5.  All are in school.  I can't volunteer, but I can drive them to school and help with homework, and usually stay up on problems. Handling each of their unique needs is tough.  I'm told.that even healthy moms.would be overwhelmed with our work, routine, and struggles with them. 

I've stopped asking to get better faster than my kids are growing.  Now I ask for my medical teams help in keeping my body together and functioning.    I just want to be the best mom I can, and try to work around my complicated, constantly.changing limits.  6 more years and half the kids are out of school.  I can't  move mountains and move.them forward in life...

I do have amazing friends, and have felt more support by extended family in recent years.  Grant has been amazing with all.this.  He carries a huge burden of the family when I bow out.  He can step in and replace me seamlessly, appointments to.shopping. 

Thanks for reading, wanted to.share a glimpse of our lives...but too complicated and to private to share more details without making myself vulnerable to misunderstandings and unfair conclusions. 

(photo was walking into the mall for our buffet thanksgiving dinner.)
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Updates...if I'm brave enough.

I've been pondering for months writing another update for my blog. 
Life is still so much better than the desolate years in and out of the operating room.  Passing my family off into the hands of my husband, friends and nannies is becoming a distant memory...most of the time. 

We are still picking up the pieces...and learning how to make due on the broken ones we are left with.  Old friends are beginning to trust, and new friends continue to make our new life rich. 

I still find myself more private, and more careful of who I share information with.  I frequently weed my facebook, to keep it a safe place to be real.  I don't feel guilty when I block relationships for a time. 

So as I ponder all of this, I am curious...

what would you like to know about me?  What have you been curious to hear as life has continued to play out for me?  What should I consider writing about for an update?

Loose ends

For several months now I've wanted to write the last chapter of my time of illness. For weeks now I've been thinking about writing a closing post. To finish off my story for anyone who might stumble upon this blog, or those who kindly read it. (Thank you)

Then the holidays kept me busy. Then I debated how open I wanted to be with an unknown reader. I don't share so much of my reality with many people anymore. Today there is only a small handful I would share the same kind stuff that used to I shared with just anyone before I got sick. Even less now that it looks like I'm as healed as I'm going to get. This all gave such good reasons to not write an ending.


Writing a closing post was also put off when I realized, "I should do it a year after I made my last post" That day is now, yet I still am not sure what to write. I want write honestly and tie up lose ends. But I don't like feeling venerable anymore, so I want to write protectively. I can't figure out how to do both. But I like endings to my stories. Especially when they are more pleasant than I expected. And I appreciate those who read and commented on my blog during a time that I really really needed the special experience a blog can give.

For now I am...

• Alive.
• A full time mom (for the past 7 months).
• Able to walk long distances (record 3.5 miles) and get pain relief from it.
• A Graduate from PT, but currently I'm back working on my master's degree in as I continue to figure out how to take care of this body.
• Getting great low back/leg pain relief from a "SpinoMed" brace. (but it's only the latest in countless devices that helped...for a time)
• Able to cook a meal and still eat with my family without increasing my general level of pain.
• Doing projects around the house (right now a big one for Grant's birthday)
• Working on my well practiced (but bad) habit of swearing (I lose points everyday, but Grant might have me beat)
• Taking my kids to doc appointments, including therapy.
• Doing homework with the 3 kids who have it.
• Singing songs, giving kisses and talking to each child at night.
• Driving. Especially driving to Seattle without spending all my health reserves.
• Standing in line, sitting in chairs.
• looking a bedroom dresser free of medical forms, notes or info sheets. (shreading/ packing up those last signs of my illness has encouraged me to finish this blog too)
• Go to school functions, even volunteer.
• Go out to eat.
• Camp and other much more fun vacations.
• Go grocery shopping, household shopping, and even shop at two stores in one day.
• And so more that i don't even think about because it's so natural to me now.

All of those things I couldn't do without dramatic increases in my pain. Many of those things I just didn't do. Or if I did them at all, I couldn't do it without stopping to have a break to lay flat. Without headaches. Without feeling overwhelmed(which led to the yelling and before mentioned swearing). Without hurting bad enough that I whimper "I hurt" without even thinking the words. Without "paying for it." With out hating.

I couldn't have done it without:

• My husband, who didn't wavier in kindness, parenting, house duties, support and love. Even when anger and pain had burnt me to a crisp. Without him, there would be little reason for the work it's taken to get as well as I have been able. And because of him I am more able to do all the work it takes to STAY as well as I have reached so far.
• My primary care doc (she is also my OB) who didn't ever give up, cried with me, and celebrated with me.
• A pain management doc (Cassius) who specializes in Marcaine injections in the spine and muscles. He managed to properly get my thyroid disorder recognized and treated. His encouragement pushed me thru the some of worst days of my illness when I gave up all narcotic pain medicine 10 months ago. My pain is not my primary thought and motivator because of his skill.
• A good endocrinologist. Wish I found him after Alex was born, I would have remembered more of my kid's infancies instead of drowning in a dark hole after each birth...if my thyroid had been properly diagnosed and treated.
• Therapists and med doctors who specialized in chronic pain
• My best shrink, a great LDS guy who has known me for 9 years, who I trusted enough to hang on. And he gave me confidence in my skill so far and future ability to hang on.
• 10 months of a general physical therapist (Joan believed in me) and a little less time with a pelvic floor physical therapist (Myndee's work and advice set the rest of my healing in forward motion).
• A family therapist for the kids. She helped us understand how to respond to each child's different symptoms of trauma from this time. I hope none of your kids ever cry at night because they were worried that this time, this surgery their mom might die. Or become so withdrawn that there is no way to comfort them.

I wish I felt this was a safe enough space to share more without being judged. Having the stitches and wounds heal was horrible on the body. I thought I was done when the skin healed. Then a new tidal wave hit, emotionally healing from this drawn out medical roller coaster. I don't know if healing spiritually was an after shock of that wave, or it's own separate space that needed healing.

Regardless, I thought I was done. No one told me that I'd have to heal a third time, this time healing my family. Each of these steps, I didn't think I could do it. I didn't think I could face the work, do the actions or even ever feel like I accomplished anything. Each was painful in such a different way, that I can't even put them in order of "what sucked the most about this 3.5 year hell". That's 3-4 distinct stages of healing, (which each give you a huge sticker on your head that says, "judge me")(But those who wear non-polarizing glasses can see it really says, "love me")


I'm sure I've forgotten someone on this path. I've left out all non-medical people intentionally as part of my desire to not be venerable. Selfish yes, but I'm not ready. There were those people who have lifted me, answered the door and phone at important times, or had been so inspired in their actions that I felt loved when my emotions were blazing hot...those people were amazing. It was because of those kind of people like that I was able to even desire to find my faith in God and also in my church I hope they know who they are.

I'm not sure where Julie fits in here, so she gets her own place. A nanny who we were so blessed to find, blessed that she put up with us for 18 months or so, and blessed that the situation was such that we were able to ease me back into motherhood slowly. Boy, were those tough weeks as I was given back the job title of "full time mom". I wasn't sure we would make it thru.

Once again, I find that my fingers were able to write a post that I didn't think possible. At this late hour, I think I've included enough to tie up loose ends and keep safe those things tender to me. Thank you for following my blog, however much I knew you. Thank you for prayers and thoughts that were sent my way. Thank you for a mostly great experience I had as I gained the title, "blogger." Thank you.

So with that I finish this blog, a record of my past, of when I was ill for so long. I hope we never come close to experiencing this time again.

And if there is another stage of healing, I quit.

The End

Does taking my positive focus posters off my wall mean...

That a child pulled the poster off and cut their head?

That grant thinks my scars are healed enough and he wants his clean white bedroom wall back.

That I have picture frames to out up Still not done with the hanging part of my big project.

Or I'm ready to move on in this stage of my grief and don't want to see signs of my illness (anymore than have to.)

So, which do you think it is?
1,2,3 or 4?


Sent from my Windows Mobile Phone

6words chores

Dead bees remind to bury 2009


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6 words of Mark

Cut hair takes the baby away.



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6 word story physical therapy

Cold pool! Still worth it? Maybe.



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6 word story about Kate

Vomit! Never, please, in the night.


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6 words

How fast she will fit it.

Sent from my Windows Mobile Phone