Happy two years, sciatica

It’s 3am and I’m awake with sciatic pain. As I tossed trying to find a comfortable position for my numb and tingling leg, it dawned on me that I hit my two year anniversary without acknowledging it had been two official years. The first year was devastating. One whole year without any feeling or sensation in my leg. One year of constant pins and needles. I couldn’t fathom it and every milestone I felt more heartbroken that I wasn’t better. Year two was much easier. The anniversary came and went without any mourning. Part of that is because my symptoms have improved (no more electrocution when I step on my foot) and part of it is because I’ve fully embraced chronic pain as a part of my life, realizing that I will be okay if I never recover. What a crazy two years it has been. I can honestly look back and say that I’m grateful for where it has taken me. Truth is, it’s hardly taken me anywhere, but it has slowed me down and turned me into a different kind of person and I like her. I absolutely love my life.

I had a hysterectomy in November. It was a good experience. Recovery was quick and easy. I was up on my feet in a couple of days and have yet to feel the slump of energy or exhaustion that they warned me about. I’ve only had two weird experiences that are still a mystery I’m hoping will work itself out. In late December I woke up in the middle of the night with the worst kind of sickness. I was nauseous and cramping and I thought I might be dying. I laid by the toilet for a couple of hours before driving myself to the ER around 2am. I was probably not well enough to drive myself but, I didn’t want to wake my husband. When you’re a constant burden to those around you, asking for more help is unbareable. Once I got on the road, I realized I didn’t have my wallet, so I drove to the hospital where I had surgery because I was pretty sure they’d admit me without ID. They did and they diagnosed me with kidney stones until the CT scan came back clear. They gave me medicine for a urinary tract infection and sent me on my way. Before the testing, nurses came to give me morphine for the pain and I turned it down because I wanted to drive myself home. After the clear CAT scan I was elated.. walking out of that hospital at 4am was one of the happiest moments of my life. I crawled into bed next to my warm husband (who didn’t realize I was gone) and fell asleep on cloud nine, no morphine needed. I was naturally high knowing I wasn’t dying.

Last weekend I started peeing blood. I passed about 25 blood clots (about the size of a quarter.. so painful!) that first morning and was able to see my doctor by the afternoon. My urine cultures came back clear but they treated me for a UTI and I’m waiting to see a urologist. Seeing my urine come out the color of cranberry juice literally freaked me out. It has since cleared and I’m hoping it’s signs of kidney stones and not something more serious.

Two years ago I was suicidal. The intensity and shock of the nerve pain was so extreme that my body was begging to die. My dreams were all about death, sometimes nightmares that would include me killing my kids so they wouldn’t have to grow up without a mom. In my dreams I would drive my van off cliffs and into lakes with everyone in their seat belts. i would wake up in a cold sweat. I was afraid to go to sleep at night. I took antidepressants and sleeping pills, but medication seemed to make my dreams more intense and lucid. My mind seemed rational during the day but at night the pain would take over and it felt like my body was begging to die. I am so grateful I was able to talk to my husband and doctors during this disturbing time. The dreams went away just before Gabe’s first birthday and I think that’s when I started to recover emotionally and physically.

I’m writing on my phone and I can’t see what I’m typing anymore. For some reason my screen won’t scroll down so I’ll stop here. Just wanted to send my blog some love and recognize that I made it two years. 24 months. 700+ days.. I legit can’t tell you what 365 + 365 = right now, but that’s how many days I’ve lived with chronic pain, all one day at a time. I should be frustrated that I can’t sleep tonight (I’ve got a full day tomorrow with little to no chance of a break) but my heart is literally so full of joy and gratitide, I needed to document it. Life is brutal and so freaking beautiful.

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.