Bedtime LOVE

I can't believe it's the LAST day of January.  How did that happen? It's 6 am in Vegas and I've been up for a while.  Usually at this time I would be bundled up on my balcony watching the sun come up, but my hair is damp from a 5 am bubble bath, so I'm going to watch it cuddled up in my bed.  And I've missed blogging so here I am.

I get asked if I am still a PARENTING COACH and the answer is YES!  What I do is actually more of a life coach, because we can use techniques for anything you're struggling, not just relationships with your kids.  I am not an expert, but I do believe that looking at the situation with fresh eyes and applying the tools I have can improve any situation or relationship.  Anyway, if you need a kickstart to your February or struggle feeling motivated, reach out to me. I am really hoping to start some group coaching soon, because so many of our issues are related.  Until then, I am going to do a few parenting blog posts.  Email me your parenting questions (janetleeshumway@gmail.com) and I will give you my best advice.  And then we can all learn from each other.

I'm going to pick a general topic today--  BEDTIME!

Bedtime is a struggle because everyone is tired and grumpy.  We've had a long day and we just want the kids to get in bed and stay there.  Unfortunately, most of time our cute little kids hit the pillow after they've been yelled at, spanked or scolded.  and then we go to sleeping feeling like a bad parent.  It's not fair that we try hard all day to be nice and patient and then we lose it all at bedtime.  No one wants to fall asleep on a negative note.  So let's change that.

Bedtime doesn't have to be a bad experience.  I know it is a lot of the time, but we have all the power in our own hands to make it magical and a time where we can connect with our kids.  With just a few simple changes both you and your kids can go to sleep feeling better about your day and your relationship with each other.  But you have to put in a little effort.

My simple advice is to change YOUR attitude about bedtime.  Stop thinking about it in a negative way.  Try to see it as the most magical time of your day and plan for it to be that way.  It's not going to go smoothly every night, but you are the creator of the environment in your home.  I LOVE  bedtime.. I start planning for it as soon as I wake up because I love it that much. 😜

What do you want your bedtime environment to look like?  Start creating a more peaceful environment.  Maybe that's by lighting a candle and bringing it into your kids bedrooms and letting it flicker while you say goodnight to them.  Maybe that's buying a diffuser and dropping a couple of nightime oils and make the room smell good.  Maybe it's putting on quiet, peaceful music and humming along as you set out school clothes for the next day.  Maybe it's reading the same book every night.  Or talking about the best part of your day.  Or taking a moment to tickle your child's back.  If you get annoyed that they want a drink or a snack or whatever, plan for it in advance!  Put a drink of water next to their bed and watch their eyes light up when you tell them Yes!  of course you can get a drink.  In fact, I got one for you!  Not everyone will let their kids drink before bedtime, but you get what I am saying.  My daughter seems to get really testy at bedtime, so I have to spend extra time with her.  She loves having curls in her hair, so I try to make time to put in rollers and talk with her about her day.  If you've got a relationship with a child that is strained right now think of something kind for them you can do at bedtime.  if you;re waking on eggshells and everything you say or do backfires, stick a love note under their pillow.

The truth is, as parents we project our negative feelings about bedtime onto our kids.  They want attention and love and connection.  Usually we don't want to give it because we are tired.  But if you go into it trying to love and connect with them, it will change your world.  Wake up with the intention to make your bedtime routine a good one.  Plan ahead, think of ways YOU can make it more peaceful and loving and then start getting excited for it!  When you are excited and happy and patient, your kids will follow your lead.  Maybe not right away, but eventually.  Keep working at it until you've created what you want.

And obviously, nothing goes as planned.  But go with the flow.  Try to stay relaxed and open to connection.  Look at your kids in the eyes.  Lay down by them for a few minutes.  Make the effort because it's so worth it.  But don't beat yourself up if it turns out to be a disaster.  Parenting is not about being perfect, or having perfect kids.  It's about showing up and looking for opportunities to help one another.  Bedtime is the perfect opportunity for love and connection.  and as you improve day by day your confidence levels will rise.  You are the right parent for your child.  They are in your home for a reason. Learn from each other.

Take some time today to think of reasons why you love your kids and let them know at bedtime!  As you are adjusting to new bedtime routines, plan for a little extra time.  So start earlier if you can or take a little nap today so you will be more rested at the end of the day.

Good luck and let me know if you see any changes in your home!

PS.  You don't have to have young kids to improve your bedtime routine.  If you're kids are grown or you've got a bedroom to yourself, upgrade your environment to make things more peaceful!  Straighten up, light some candles, turn on good music and plug your cell phones somewhere away from your bed!

This cotton candy sunrise is happening outside my bedroom window.  I'm already looking forward to the sunset!

post back surgery

Hey!  I just recorded a video about my back surgery and tried to put it on youtube.  It's uploading, but it says it won't be finished for 167 hours.  We'll see if that ever happens.  And while I'm sitting in bed and not feeling tired (and not working on a family book project) I thought I should write up a few things about my experience.

I went into surgery completely educated, knowing what could possibly go wrong.  I was willing to take any chances because I didn't know what else I could do.  Since the moment my sciatic nerve was pinched in February, I have very little (to no) improvement in my nerve pain.  My numbness has gotten a little better, but really only in my big toe.  If I had seen gradual improvement or more feeling in my foot, I would have put off surgery longer.  The average recovery time for a pinched nerve is 9 months.  I had been through 6 months of constant tingling and pain and didn't want to do three more (or another 6) so we scheduled surgery.

I was at the hospital the day before for several hours.  They did a bunch of blood work and ran another EKG.  I went home feeling good, even excited for the next day.  I really wasn't expecting all of my pain to go immediately, but I had heard enough stories of people who came out of surgery pain free, so I was hopeful.  I wasn't able to sleep a wink the night before.  I was in a lot of pain (and I was excited) so sleep didn't happen.  Heading to the hospital the next morning, I had the thought that my pain level was at an all time high.  Sitting in the car or on a hard chair has been the worst position for me..  Standing is a little better, but I've spent about 23 hours a day lying in a bed. The thought of being able to walk or sit without pain was so exciting to me!

Everything seemed smooth at the hospital.  My surgeon came in energetic at 6 am.  He told me that an emergency had come up that morning and he tried to get himself out of it so he didn't have to make me wait any longer.  Two anesthesiologists were present along with a neuro-therapist.  My nurses were the last two people I saw before being put out and the first two voices I heard while waking up.

After surgery, but before I was able to open my eyes, I thought my body was on fire.  I remember everything pitch black, I was unable to move or speak or see.  I could hear the voices around me, but the only thing I could concentrate on was my body screaming at me.  I was out of control on the inside, but literally couldn't move or scream.  My nurses said that I had streams of tears coming down both cheeks before I opened my eyes.  I totally believe that.  It seemed like I was screaming in pain for about ten minutes before I was able to talk, but I highly doubt is was that long.  All I know is that my brain was working and I was trying to talk my body out of being so mad at me.  This is going to sound terrible, but the only thing I possibly compare the situation to (and this has never happened to me before, so please forgive me if it's nothing like it.) But it felt like I had been given a date rape drug and while I was out, someone violated my body in a major way, set me of fire and then left me alone.  It was traumatizing..  The first question they asked me after so woke up was my pain level 1-10 and I said FOURTEEN. (Right before Gabe was born someone asked my pain level and I told them a 5.  I would still agree with both of those levels now.. Having a baby is nothing like being on fire from the inside.)

Obviously I had lots of drugs in my system.. So much that I couldn't move and I could barely talk.  But in my experience, pain killers have not been able to calm down my nerves.  So while I was sobbing, they kept trying to give me more stuff.   I don't actually remember most of what was going on because I was focusing so much on breathing.  But I do remember laughing really hard because there was a woman next to me behind a curtain who kept telling me to stop crying.  "Stop crying, Friend.  Please don't cry anymore."  Aaron was pretty sure it was a little boy (and there was no possible way.) So we made a bet and Aaron stood on a chair and peek over the curtain.  It was a middle aged woman.  I only have memories of this because I filmed it.  I was laughing so hard and simultaneously crying, so recording it seemed like the right thing to do.

I had an empty stomach and after two or three hours of sobbing (and feeling no relief) They finally decided to wheel me upstairs and get me situated in a room so I could get some food.  Aaron told me later that there was some kind of mix-up and they took me to three different rooms, finally to go back to the place we started.  All I remember is that when they started to move me, I had to throw up.. but I didn't have anything in my stomach, so I was dry-heaving.  And then they spun my bed around in circles and it was impossible to not scream.  I asked them to leave me alone and stop spinning my bed around.  The cute nurse (a guy) was so kind and apologized several times.  I felt bad that I was his patient that day.

Once we got into a real room, I tried standing up.  I really shouldn't have, but I thought I was on fire, and I needed to move around.  The first thing I did was rip off all of my clothes.  Aaron wasn't laughing at the time, but now that we think back and remember, it's funny.  I went into the bathroom to throw up in the toilet, and then I saw the shower. I felt like I was burning to death so a cold shower sounded heavenly, but Aaron said no way.   I asked if I could lay down naked on the bathroom floor and Aaron said no.  I was tied to an IV pole, I had no clothes on and I had a huge incision and bandage on my back.  Aaron coaxed me to get back in bed and kept trying to cover me with a sheet or my hospital robe, but I kept tearing them off.  Every time a nurse or doctor came in, I am sure they thought I was a crazy person.

I don't really think I was talking.  I don't talk much when I am in labor (unless someone asked me a questions directly.)  There were many times when I asked Aaron to tell everyone how I was feeling.  Can't they see I am in too much pain to converse?!  When the attending doctor came in and asked how I was doing, apparently I asked him how I could die.  All I wanted to do was die.  Aaron said that the doctor scribbled notes and turned to the nurses to put me on suicide watch.  That's kind of funny now, thinking about Aaron watching the whole thing play down.  A new doctor (the nurses later told us he was brand spanking new) and a naked wife who wants to die.  At some point I asked Aaron what he was going to do with me.  He smiled and said, "If you don't shape up soon, I am sending back home and your parents can take care of you."  That made me laugh out loud.  I know Aaron was stressed, but he seemed to know what to say to me, and for that I am so grateful.

My temperature was normal, but I felt like I was burning up.  So we turned the AC in my room to the coldest possible temp.  Everyone was freezing but me.  My cute friend came to sleep with me in the hospital that night and she had a few blankets.  I remember sleeping that night and wanting to lay down on the tile.  Stop, drop and roll.  I was dying for a cold shower too, but I don't think it would have made a difference.  My nerves were overreacting and not much could calm them down.

The night was rough.  I was delusional.  I didn't take any sleeping meds because most of that will affect Gabe and I am nursing.  So I woke up a lot.  I was SO SO grateful to have my friend Evalyn with me.  She stayed up most of the night and kept asking me questions.  Talking really seemed to get my mind off of things.  Around 3 am she fell asleep and I remember staring at the ceiling, wondering what could have possibly gone wrong.  That night, once my nerves had settled down a little, I noticed my left arm was burning and numb, a lot like my leg, but not as intense.  I didn't think too much of it at the time because honestly my entire body was hurting.  Funny enough, the back incision has never actually hurt me.  I haven't noticed or needed any pain meds for it.  I think if my nerve pain was less occupying, my back would hurt more.

I am two weeks and two days post surgery.  My nerve pain is back to where it was before I went into the hospital.  Super annoying, but now I know it can be worse, so I am grateful I can manage it.  My arm has never had feeling in it since I came home.  My hand and fingers are okay, but my elbow up to my armpit are killing.  It hurts to touch, but at least I don't have to put weight on it.  My leg is so much more of a problem.

I saw my surgeon last week.  We had lots of follow up tests and my spine looks good.  There is really no reason I still have constant nerve pain.  I talked to my doctor about my arm and he doesn't believe me.  I mean, he's a back surgeon and he did his job, but it feels like that visit was the end of the road for us.  I made an appointment with a neurologist and we'll see what they say.  My surgeon wants me to give the recovery a full 6 weeks and see if there are any changes.  Of course I will.  What else can I do but hope for improvement?

Since being home I've tried some emotional/energy work to see if this was happening for some other reason than physical.  I didn't really feel like it was something I needed before surgery, but the trauma at the hospital and not feeling any better made me feel like it was worth doing.  I found an energy worker who is certified in the Body Code.  I also made a video about my experience, but I really cannot believe that this stuff is for real.  I mean, I do think it can help you through emotional issues, but I don't see how it can really help when youre sick with a physical problem.  I was really hoping she would sense that I had a virus (I had just started reading about EBV and it made a lot of sense to me!)  But most of what she said was hard to relate to.  The oddest part was when she went through emotions that were passed on through generations.  She felt that I had an evil spirit (who was related to me) who has been haunting me.  She said the words that came to her were "I won't leave you alone."  Hmm.  She tried casting this spirit out and said I should feel better.  I hung up the phone trying to be open, but the more I thought about it, the more it sounds like voodoo.  I really hope I dont have an evil Grandpa haunting me.  If so, the conversation I have with him after I die won't be pretty.
I've had a lot of bizarre experiences over the past 6 months and I've met some really, really interesting people.  Most of the time I leave the doctors office and cry the rest of the day.  It's emotional spending all day talking to someone who can't help you.  I hate getting babysitters or leaving my kids at home and the worst is I have to sit in the waiting room.  Instructions after surgery were to limit sitting time to 30 minutes a day.  Okay, well don't make me wait for 90 minutes in your office, then.  But the time in the waiting room is also special.  I get to talk to so many people who have similar issues.  Most of these people are white-haired and wrinkled, but I really related to them and feel bad they have to deal with this.  I feel bad for myself too, that I am so young, but usually I cry because I am grateful that I don't have other issues and that my family is so supportive.

That's all for now.  My kids keep trying to talk to me.  I will try to post the videos if they ever download.  I really wish I could find someone out there who was going through a similar situation.  I really tried to be prepared for surgery, but I am not sure how you prepare for that.  I think I have done pretty well processing it afterward.  I can look back and laugh at it and feel really grateful that its behind me.  If I could go back in time, I can't imagine not getting surgery, so I kind of feel like it's meant to be.  I plan to be a therapist someday and if ever anyone says they want to die or they are in so much pain they can't handle it anymore, I know exactly how that feels.  Hopefully I will know how to help them.

 Aaron took a TON of pictures at the hospital.  I was so annoyed at him (he never takes photos, ever!)  But now I think it's hilarious and I am glad I have them.  They are on his computer, so I will have to add them later.

Until next time.  Happy weekend.

the Epstein-Barr Virus "hit me like a truck". Several times, actually.

If you've seen me in person or talked to me over the phone you know I am obsessed with this book. I would recommend reading the whole thing, cover to cover. But here's an article with a chapter specifically about the Epstein-Barr Virus. It knocked my socks off.
http://goop.com/the-medical-medium-and-whats-potentially-at-the-root-of-medical-mysteries/

Here are my own stages of the stages of EBV.  There are several more experiences I could highlight, but these are the most significant.

Stage 1-- When I was a little girl I used to wake up in the middle of the night with aching joints.  I thought my ankles and knees were cold, so I would put double and triple pairs of socks and climb in bed with my parents.  I don't remember the aches and pains going away once i got warm, but it seemed like it happened more when I was cold.. I can't tell you how often it would happen, but I would guess once or twice a year, for two to three nights in a row.  I also have memories of trying to do push-ups in elementary school and collapsing because my wrists were in so much pain.  But then the following week, they would be totally fine.  (This problem with my joints still happens to me now, probably once a month, but only for a day or two.  It usually goes away with some ibuprofen and a nap.)

Stage 2-- My sophomore year of college I was minding my own business, enjoying the social life and then one day, BAM!  I was struck down with mononucleosis.  It was literally as though I had been hit by a truck.  I was sleeping for 20 hours a day, at least.  I never got out of bed and even packed most of my stuff and went home, planning to withdraw from school.  I didn't, though.  In hopes of getting better in a couple of weeks, I toughened up and went back to school.  Unfortunately, I didn't get better for a solid 6 months.  It was one of the hardest experiences of my young adult life.  After I got married (about 6 months after I recovered) I went to the doctor again because I thought I had relapsed... I was working full time and going to school and could not get my act together.  Luckily, that exhaustion seemed to last only a few weeks and then I was back to my energetic self.  I worked after Ben and Luke were born and even though I was a busy young mom, I had energy to spare.

Stage 3-- After my third baby was born, I experienced what I thought was post-partum depression.  I was SO extremely tired and couldn't seem to wake up in the morning.  If my kids would have let me, I would have taken 6 hour naps.  I was so tired.  I went to the doctor and they said I was depressed, but I didn't feel sad.  I wasn't emotional.  I was just really tired.  All kinds of blood tests were done and they said my blood sugar was always low, so I needed to eat more often.  But every time I had a snack, I would crash again.  When Zack was about 1 year old, I was diagnosed with Rheumatoid Arthritis.  Two different doctors in two different states confirmed the diagnosis.  I was sad, but grateful to finally have a name for it.  On my very first visit to the Rheumologist (is that a word?) I was told that there was no way I had RA.  I was mis-diagnosed and was sent home without any explanation.  I knew something was wrong, but I didn't know what.  Over the next 3 years I had a series of 3 miscarriages.  When Simon was born 4 years after Zack I was really worried about experiencing post-partum depression, but other than a few weepy weeks, I actually felt great.  I was back to my normal self after getting adequate rest and exercise.  I had no issues with either of my girls pregnancies or post-deliveries.

Stage 4-- after the birth of my seventh baby, I was on top of the world.  My pregnancy was tiring, but I felt good.  I went over my due date, delivered my own baby and felt so good.  Two days after he was born, I remember thinking that it didn't even feel like I had a baby.  I did have some aches and pains in my hip and a little numbness in my foot, which was something I had never experienced before.  Three weeks after he was born, while walking down the stairs, I collapsed in the worst pain I've ever felt.  I was unable to move or even breath.  The nerves in my right leg were on fire.  I went to the ER, followed up by five thousand doctor appointments.  The pain in my nerves was constant, at a level of a 8 (childbirth is like a 5.) and this burning sensation never went away.  There were no professional who could help, until I saw an orthopedic surgeon who told me that although risky, back surgery to remove a herniated disc was the best way for me to recover. Less than two weeks ago, I came out of back surgery in the absolute worst pain I've ever been in.  I was throwing up, sobbing and telling the doctors I wanted to die.  I was literally burning up from the inside.  I ripped off all of my clothes, turned the air up in my hospital room to freezing temperatures and cried for 12 hours.  I don't even remember most of that experience, only that I described my pain level at a 14.  It makes me laugh that I didn't say 100, but 14 was the best way I could describe it.  If childbirth was a 5, typical never pain an 8, then 14 was out of this world.  Two weeks later, I would say my pain level is back at an 8.  When I feel like crying, I remember what a 14 feels like and I feel grateful.

I am not saying I didn't need back surgery.  I believe it was the best route for me, but I think my problem is much bigger (or smaller) than a herniated disc.  This article and the book "Medical Medium" is the most logical explanation to what I've been experiencing.  I have had every single stage of the EBV evolution, in the order explained.  I truly believe this guy is on to something when talking about "medical mysteries."  I tried talking to my health care professionals about having a virus and they think I'm crazy.  But you know what is crazy?  Continuing to take medication that does not work for me.  If I could total up the number of hours and dollars i've spent on medical staff who have no idea what to tell me, I could feel frustrated.  But i don't.  This is my path for a reason, and I know I am going to get to the bottom of it.  I know I will get better.

So, if you're interested, read THIS awesome article.  Then read his books.  And then message me, I'd love to talk to you about it!

Chronic pain -- the emotional side effects

After writing out my physical side effect I wanted to write about how bizarre my extreme emotions are... and it makes total sense to me..  But when I try to explain it to others (even my doctors and my own mom) it seems like I am contradicting myself.  My husband seems to get it.. but I think he's just seen it day to day and realizes that I am pretty happy and also extremely frustrated and miserable at the same time.

How can someone with chronic pain... (again, I am only speaking about my OWN experience, not everyone with chronic pain and definitely not everyone with Sciatica because our symptoms are very different.) but how can I be in constant pain and feel happy?  I am not sure, really.  I think because I HAD to learn to adapt or else I would completely hate every aspect of my life. The first two weeks I was an absolute mess.  I cried non-stop and didn't know how I would ever cope.  But after two weeks of the same feeling 24 hours a day, never getting any kind of relief not even while sleeping, I didn't WANT to cry anymore.  It wasn't the way I wanted to spend my time.  My body wanted to cry and I still allow it to shed tears, but I can grieve my physical state AND be happy.  Below I give more details that I wasn't able to record because it was just getting too long (plus my kids walked in).  So below is my written version for my journals.

I want to start out my saying that I am in the best emotional shape of my entire life.  Never before have I felt so emotionally stable.  I don't know exactly WHY this is, but my guess is that I started reading emotionally healing books about a year ago and it speaks to me.  Through this process of reading and researching, I decided to become a parenting coach to help parents deal with anger or frustration.  Being a coach has probably helped me more that it's helped my clients because it allows me to practice what I teach.  And it also helps me feel like I am doing something productive.  and something, even if it's just a little, is so much more than nothing.

What I am saying is that I know I am not depressed.  I know what depression feels like.  And I just had a baby, so it would be totally normal for me to feel down or blue.  Months ago, I might describe depression as "staying in bed all day long, not going anywhere or wanting to do anything."  But now I know that is absolutely not true.  I stay in bed most of my days and don't go anywhere, and I feel pretty happy about it. If I had to rate myself on a sliding scale of how depressed I am right now, I would say that I am opposite of depressed.  I am genuinely really proud of myself and the way I am dealing with what life throws my way.  I am going more with the flow now than I ever have and it feels good to be present and accepting of this sucky situation.

Here area  few other bullet points of why I know I am not depressed.. .

• I get so excited thinking about my future, what I want to do, the books I want to read, the places I want to visit.
• My relationship with my husband is maybe the best it's ever been (but I doubt he would agree...)  I mean, we don't agree on very much (opposite personalities and very different approaches to life) but we genuinely love being around each other and we laugh a lot.
• I don't get frustrated or upset with my kids.  I mean, being in bed all day can make a person cranky but I am not cranky.  I feel bonded with my kids and we are close and I feel connected and loving towards each of them, maybe even more so than when I was not a lame mom, and by lame I mean sick.  As if I would think I am a lame mom.  jk, I am totally that too.
• I wake up with a bounce in my step.  I mean, I don't actually bounce or step.  or even get out of bed, but I wake up happy.  I still love the sunrise.  I still meditate in the mornings.  I am doing things that make me feel a ton of hope and optimism. 
• I have NOTHING on my schedule besides doctor appointments.  And nothing on my schedule used to seem so boring but it's not boring to me.  I can read.  I can talk to my kids.  I can take a nap if I feel tired.
• I am getting plenty of vitamin D and that always makes me feel good.  Sometimes when I am in the pool with my kids I will say to myself, "My life is perfect."  And then one of my kids will touch my hurt leg and I will want to scream in pain.  And then I smile at myself because I am so extreme..
• I've missed countless experiences that would normally crush me, but I don't feel crushed.  So many family things, birthday parties, mission farewells, my neices baptism and even my best friend's wedding last month.  I swore I would do whatever it took to make it to that wedding.  When my husband said I was delusional for even trying to go, I realized he was right.  And I actually had a great day with my kids instead of feeling bad about not being there.  This is really the day I knew I wasn't depressed.  
• When I try to complain about something... I literally can't think of anything else to complain about except for my health.  I mean, my list of things to be sad about is one item long. 

Here's where I move from bragging to sounding really scary and pathetic.  But I needed to preface what I am about to say with the fact that I am not insane. The emotional toll of being ill is something that has been beyond what I've ever experienced. Most of it comes when I am really, really tired but nothing I will take my mind off the pain. I would say the majority of the time is in the middle of the night, but not always.  This insanity can hit me hard on a random afternoon  when my body is so uncomfortable it feels like I am going crazy.  I will try to explain what happens at night because i think the most severe situations have been in the middle of the night when I am too tired to read but no one else is awake to talk to.

The emotional side of chronic pain makes you want to kill yourself.  And I don't mean that you rationally have reasoned to take your own life or that you are so depressed that you have nothing to live for.  I mean that your body is so completely exhausted that the only way you can think of a relief is to die.  So not every night, but way more nights that I want to count, I get suicidal thoughts.  I lay there and the pain drives me so batty that all I can think about is taking all of the pills I have and swallowing them with a glass of water.  I know I don't want to kill myself so then I will think of ways to die, but make it not look like a suicide.  Like drowning in my pool somehow or taking something untraceable or even figuring out a way to die DURING surgery and pretend it must have been the doctor's fault. Maybe I can figure out a way to just never wake up...

I realize this sounds scary, and it does scare me, so I will try to snap out of it and think of everything that makes life worth living.  Sometimes it works.  But sometimes, even when I think of my precious children and my sweet baby who NEEDS me to stay alive (obviously, I love all of my kids, but Gabriel is really the only person I am taking care of currently) so I will concentrate so hard on all that I have to live for, but there is a level of pain that is so deep that leaving behind your newborn isn't even a big deal.  Someone can feed Gabe a bottle.  My husband can marry a wife that is more compatible.  My kids are self-sufficient.  Roma wants to do her own hair and dress herself anyway.  Eden is too young to even remember.  My siblings have plenty of other siblings. My parents are so faithful and understanding and they will find peace.  Everyone dies anyway. I mean, it's an unfathomable kind of low.  It's so much deeper and darker and more lonely than I have ever felt in my life.

When I finally get some rest and snap out of these really hard thoughts, I feel a lot of gratitude.  Mostly that I was too exhausted to even get out of bed, let alone carry out any kind of crazy plan.  I know immediately when I wake up that it wasn't coming from a place of my own thinking, it was literally my body talking to itself, it's so sick of being sick.  I don't actually want to remember how dark this actually feels, but I'm pretty sure that I will never, ever, ever judge any person who kills themselves. I only have love and admiration for these people.  So much love.  And so much compassion for their loved ones who cope with the aftermath.  What a tragic mess to clean up.

Life can be extremely hard ...and it's not fair.  Bad things happen all of the time and sometimes there will never be an explanation other than life just sucks.  This is coming from a self-proclaimed optimist who tries to see the understanding in every situation.  Sometimes there is no silver lining and it's all dark rain clouds and you just need to stay in bed until the sun comes out again.  I used to think that dancing in the rain was so much more fun than hiding under the covers, but you know, cuddling up in bed and putting a pillow over your head is actually quite satisfying.

For those of you who are now worried about my well being, I do want you to know that I talk openly about those close to me, especially my husband and health care professionals.  I am not ashamed of it and I am open to all kinds of medication to help.  The doctors who I've talked to said it's completely and normal to have these kinds of thoughts with severe chronic pain.  The thing that has helped me the most is talking to others in physical therapy.  There are basically two things that we've repeated over, "I want to die" and "I want to amputate my leg." Obviously, I don't want anyone to cut off my leg and I don't actually want to die, but those two thoughts ran through my head constantly the day I went to the ER.  And they tend to come up when my pain levels can't be helped with medication or meditation or positive thoughts.

These experiences have changed me.  For the better and for the worse.  It's given me a deeper sense of empathy and compassion and it's made me more grateful. (I had 6 babies without these symptoms, lucky me!)  It's also allowed me to completely separate my PHYSICAL pain with my EMOTIONAL thoughts and well being.  It's so hard to explain, but I can be laying down in a bed or sitting on a chair and be in SO MUCH pain but also have a full on conversation with someone on the phone or in person and they won't even know what my body is feeling.  It's like I am acknowledging the pain, but not letting it control me.  Not because I am super-human or anything, but that I am so used to feeling that I can separate myself from it while also recognizing that it's there.  Okay, there is actually no way to really explain it in words, but what it is has been a total gift to me and I can HATE experiencing it while at the same time realize that it's taught me so much and it's helped me feel alive in a way that I didn't know existed.

This whole post seems like a foreign language.  You know when you write one word and it just doesn't feel like it's a real word it feels like nonsense?  That's how I feel about this entire post.  Oh well, I tried my best.

The end.

also, please don't call my mom or husband or a shrink and tell them you're worried about me.  I actually talk to them in person, so we're all good.  xoxo.    

Chronic pain -- the physical effects

Again, I am going to preface this blog post with saying that this is MY experience.  It may be entirely different for so many others... but this is the long version of my experience.  It's really super long and I only wrote it for my own documentation, but also don't mind sharing if it could help others step into the world of someone experiencing severe pain.  It's only a glimpse, but it may give people a new perspective (or others not feel so alone.)



Five months ago, if you asked me what Sciatica was, I wouldn't have even known it was an actual word.  In fact, I don't think I even knew a sciatic nerve existed.  I mean, I knew I had nerves, but I didn't know the nerves had their own names!  And that one long nerve ran down each of my legs.  Which serves me right, I had never in all of my 37 years thanked my sciatic nerve for working properly, giving my feet and leg feeling and allowing me to walk and run and even sit in a chair with ease.  Today I can tell you that I am truly grateful for my legs.  I am a little more grateful for my left leg than I am my right leg at this moment, but overall, I am just in awe of the human body and how everything (usually) works with ease.  Organs, muscles, bones, nerves, blood it all does it job...  And when something is off balance, our bodies communicate it quickly and with such clarity.

On January 29th I had a beautiful baby boy.  I delivered him all on my own and my body told me EXACTLY what to do when everyone around me was disagreeing.  That single experience will go down as one of the most empowering and exhilarating moments of my motherhood career.  It really was miraculous and yet so natural at the same time. 

Less than 48 hours after giving birth, I noticed that my right foot was asleep for an unusually long time.  Pins and needles were making it uncomfortable to even concentrate.  I told my parents (who were here to see my newborn) that I couldn't get feeling back in my foot and that it hurt to step on.  That night before I went to sleep, I researched what was wrong and found that I probably had some nerve damage.  Actually, I am pretty sure my husband did the research because he is the responsible one in our family. 

I called my OBGYN to explain my symptoms and was told that I needed to see my primary care doctor.  I called an made an appointment, but the earliest I could see her was 3 weeks away.  Other than my tingly foot, I had no other complaints.  I had never had such a great physical post-partum recovery.  No soreness or pain.  I was energetic and feeling like a million bucks. 

Gradually over the following week or two, I became more worried about my foot.  The tingling had moved up to my calf.  My heel and pinky toe was now 100% numb.

On February 19, while walking down the stairs, my right leg gave out and I collapsed.  The pain in my right leg was completely unbearable.  I felt as though I had dipped it in boiling hot oil.  It was literally on fire.  I could not move.  I couldn't even think straight.  I curled up in a ball and tried not to throw up thinking about the pain.  My baby was crying in the bed upstairs and dogs were barking at me below.  Eventually, I was able to text my husband who was in church with our older children.  It was the closest I've ever been to calling 911.  I took a handful of pain medication and sleeping pills to get through the next 24 hours.

On Monday February 20, President's Day, my husband took me to the ER.  I literally couldn't even talk because I was shaking in pain.  I was sobbing uncontrollably and was curled up in fetal position.  Crawling on my hands and stomach to go to the bathroom.  I was given a steroid shot in my butt at the ER which numbed my entire leg (it was already numb on the outside of my leg, but the burning inside was toned down.)  I had several xrays and tests, but that doctor told both my husband and I that he could see nothing wrong or unusual about my spine or nerves.  (later after requesting those xrays and having my surgeon examine them, my L5-S1 disc was herniated at the ER... this would have sped up my referrals and I needed to wait another month to get a second MRI and xrays..)

Throughout the months of March, April, May, and June, I had countless appointments with ANYONE who could help me.  Physical therapists (6 appointments with several pts), chiropractors (5 different offices), massage therapists, energy therapists, acupuncturists, anesthesiologists, pain management centers... I was literally desperate for any kind of opinion.  Medication would put me to sleep, but i didn't find anything that could alleviate the constant burning.  I had learned to walk by slowly dragging my dead leg, firmly planting my foot on the ground and biting through the pain that shot up my leg as I put pressure on it.  It was much better while laying flat, a worse in standing position and almost unbearable in sitting position.  While sitting on the couch or in church pews, or at the kitchen table my leg would feel on fire.  I found that I could stand or walk for about 30-60 minutes a day and sit for about 10 minutes before I needed my leg completely straight and my foot free of pressure.

I've had so many people (health professionals especially) ask me to explain what it feels like and where in my leg I feel it.  It's really hard to explain because it's a sensation I've never felt before.  It's much easier to say where I feel it because it's MY ENTIRE LEG.  From the very tip top of my hip (butt cheek included) all the way down to my toes. When I touch any part of my leg, it doesn't feel like my own leg, yet under my skin I can feel constant pins and needles. And sometimes, out of the blue, it won't just tingle, but it will send an electric shock all the way up my leg (like stepping on a charged lego every time you put your foot down.) It almost feels like a funny bone tingle X100.. and you can't shake it off or make it go away..  from the moment I fell down the stairs, I have yet to get feeling back in any part of my leg.  ((There was ONE MORNING after a steroid injection where I had feeling in my foot, but not my leg.  I woke up feeling my sheets on my toes and I thought I was cured!  I literally was on cloud 9, but the burning feeling was back and just as intense within a few hours.  The other steroid injections I had didn't make any difference, which was a bummer.    

Sometime in April or May, I got feeling back in my big toe and that feeling has been permanent and such a HUGE blessing.  It has allowed me to walk much better because I put most of the pressure on my toe and alleviate my heel, which reduced the electric shock up my nerve every time I stepped.  I also was able to drive safely with my big toe.  Driving was painful and probably dangerous, but I only drove to and from dr visits and was really careful about how fast I was going... I never wanted to have to slam on my breaks because it was too painful.  I literally walked and drove like a Grandma.  

Once i got feeling in my big toe again, I felt a lot more comfortable driving my kids to school.  and feel a little more confident about going out in public.. although my first time out I almost fell over on top of a woman at the gas station.  The whole experience was quite funny because this woman's bra had broken and she was trying to fix it.  Forgetting that I was a cripple, I offered to snap it back together, but when I tried, I lost my balance and almost sent us both to the ground.  I blamed the entire situation on Eden and said my toddler knocked me over instead of telling her that I didn't have feeling in my right leg.  She accepted my apology, but didn't understand why I thought it was all so funny.  I have been a lot more careful in public.  And I am sure to take lots of medicine when I am out for very long.. (I attended a John Mayer concert with Aaron because I didn't want to sell the tickets and I literally packed my entire medicine cabinet in my purse.  The security people at the arena checked my bag and gave me the most judgmental look when they handed it back.  I really think they thought I was a drug dealer.)

After five months of who knows how many appointments, I finally got clearance for surgery.  I really love my surgeon even though he hasn't actually fixed me, yet.  He's just the first doctor who has understood how bad this experience for me.  I cry every time I go to his office. Apparently 80% of patients with sciatica can heal without surgery, but the average recovery time is about 9 months.  I was really hopeful to get through without surgery but after consulting with several doctors, I think the severity of my herniation (blocking two nerves which intensifies the numbness, burning and weakness in my leg) I feel really good about moving forward.  My surgeon told my husband today that I have a herniation the size of a semi-truck (giving it a rating of a 8 out of 10 for those he removes surgically.) I had 4 visits with my surgeon before we could put surgery on the calendar.. I can't even explain the loopholes that I've had to jump through with my insurance company.  I mean Aaron broke his ankle and got surgery the next morning.. Obviously people are more hesitant to cut open your back, but 6 months seems outrageous to me.  Obviously everyone needs to follow protocol and things can't move in lightening speed like I want, but waiting for approvals has been the #1 frustration, but every time I feel frustrated, I remind myself that we have coverage.  I am so grateful for insurance.  I am so so grateful for modern medicine, that I live in this day with MRIs, surgeons who know how to help me, hospitals and sterilization and all that jazz.. so much to be grateful for.  The thousands of dollars we've spent since January on my medical expenses makes me sick to my stomach, but when I see that actual bills before insurance, I am happy we don't have to file for bankruptcy.  My insurance company is a pain in the A, but it's also such a huge blessing.  (Yes, equal gratitude and frustration can exist at the same time.)

I have nightmares that I will have permanent nerve damage.  I stress that I will never get better.  If I had known when this started that my pain level wouldn't get better over months of time, I would have wanted to die, and I don't say that lightly.  When I watch the movie "Me over You" now, I can 100% support euthanasia.  That guy had no children, no spouse.  Of course he wanted to die peacefully and in his own way.  It's such a beautiful way to say goodbye... because for me, there has been nothing more traumatizing to be a full grown adult and be a burden to those around me.  Its so emotionally difficult.  

When my little sister came into town with her three young kids and cared for me while my husband was at scout camp was harder than I thought it would be..  I could hear the tired little kids crying after a long day and I knew that my sister was making dinner and having to bring some up to me because I was in too much pain to leave my bed (and I had literally crawled on my hands and knees to the bathroom) I felt so useless.  It's not an emotional problems, it's a physical thing.. you want so badly to get out of bed and help, but you cannot.  I didn't know what else to do but pay her for her time and I guarantee it wasn't enough money :)  Hopefully I can return the favor to her in the future.  I am so grateful to her, it brings me to tears.

Gratitude has been my saving grace.  It could be a lot worse than it is.  When I talk to others about their chronic pain conditions, I cannot help but sob.  I mean, the ugly kind of sob where you put your hands in your face and or grab a hand towel to soak your tears.  Oh, the amount of tears is ridiculous.  

But it's so nice to connect with others who know what I am going through, but its also hard because I just can't believe how common it is.. so many people in hospitals or sitting in waiting rooms at their doctors offices just in Las Vegas.  I imagine how many around the world and it's overwhelming.  And so many have several issues at the same time, not just nerve pain, but bad knees or aching joints and migraines.  One woman I sat next to has had my same symptoms for more than ten years.  Another woman I talked to (who was probably about my age and I just KNEW she was dealing with sciatica because of how she walking in physical therapy) told me that she has to work 40 hours a week in order to keep her insurance and she's on her feet all day.  When she told me that, tears poured out and I couldn't even get my words out to her.  I CANNOT imagine how she is even coping.  HOW?  Another woman is single and has no one to help her at home.  She grocery shops for herself every single week.  

The grocery store is literally hell on earth to me.  I mean, I guess there could be worse places like the mall or the zoo or Disneyland, but I dread going to the grocery store, even though I really really really miss being able to run in and buy food to make dinner for my family.  My husband and my neighbors have shopped for me for five solid months.  What would I do if I had to park and walk through those isles every single week?  I have been three times (maybe four) and guess what I do when I get in my car after shopping?  I sob at my wheel.  If I have kids with me, I put on my sunglasses and I try to hide my tears that stream down.  I cry because I have been going to the grocery store for years and never ONCE did I realize how healthy I was to walk, put groceries in and out of my cart, load bags and just browse the isles to find what I need.  I know it sounds dramatic, but honestly the little things to be grateful for have helped me the most.  Every day I can find dozens and dozens and dozens of little things to make me grateful and honestly that gratitude fills my entire body with peace and joy.  

Believe it or not, my #1 "little" blessing over the past 4 months is having feeling in my big toe.  This big toe of mine is my best friend.  It allows me to drive, to walk down my stairs without having to crawl.  It allows me to walk without falling over.  It has allowed me to get in and out of my pool everyday this summer (it's actually pretty dangerous to be in water for some reason.  I have literally no sense of balance because of the weight difference.  It really makes no sense why I become a complete puppet without bones in the pool, but it's kind of funny.  I will be sitting on a raft with my baby or with Eden and I am SO off balance that I fall into the water with both of them depending on me, and then I try to step and we all three go under.  Obviously, I need other help out the in pool so we don't all drown.  Yes, I can swim laps and I have tried so many times to see if it gives my leg strength or if it's helping my core (therefore strengthening everything around my back.)  But my right leg is SO numb it's almost like a dead leg.  So swimming takes so much concentration kicking my dead foot that just makes me feel incapable.

Another HUGE blessing is not having any back pain.  I know, I am having back surgery, but I have zero pain in my back.  I am so limber and I can still do amazing yoga poses.  I can't even tell you how many people have told me that yoga or stretching my leg muscles up against the wall will cure my sciatica. I've purchased the $300 "cure sciatica at home" kit with workout videos and stretch bands and belts you put in the doorway to bend your back.  I have done all kinds of cleanses, oil treatments, diet changes and supplements (my favorite really was the 50 tablets of charcoal every day, it was amazing and I am not exaggerating one bit, I want to live off of that stuff.)  I've done steroids and muscle relaxers.  I've purchased lotions to penetrate through the tissues.  Just a few days ago I had the sweetest lady trying to help me say, "I had the exact same issues as you and my surgeon told me that I could either do back surgery or I could do Pilates and I decided Pilates was a much safer route for my body."  I totally believe her and I don't doubt that so many many many solutions have worked for other people.  But I can barely sit on a chair without crying.  If my foot touches anything (and I mean, if my child brushes up against the bottom of my foot by accident) I jump as though someone has just stuck my pinky toe in a light socket.  I know, I sound like the biggest baby ever!  But nerve pain can turn adults into big fat babies.

There are people all over the world with chronic pain who never get better.  They deal with physical torment every hour and have nightmares about it when they go to sleep.  It's a real thing.  They are NOT over-exaggerating or making it up to get attention.  There is nothing worse than feeling like a burden to other people and wondering if you are a hypochondriac. I never want to take my health for granted.  The ability to walk or go down the stairs or step into a swimming pool without being afraid of falling is what I dream about and running around the block right now seems like a full on fantasy.  I just don't want to look back at this time and tell myself that it was all in my head.  I really want to put it all behind me, and at the same time I don't want to forget.