The long story: Where I am, and how I got here. (Sept 09)

Hello friend and thanks for reading this.

I realize I need to update my sidebar:what is wrong with you.  Not only have things changed, but I’ve had new friends read this and still be confused on “what I have”.

So here is how I describe to people what I have.  Read the short story on another post here.

Pain sucks.   And you can’t see it, so I’m the only one who knows when it’s bad or okay.   Which really sucks.. 

What I have is permanent chronic pain in my back and left leg/foot.  I have chronic pain everywhere a bikini bottom would fit.   So far I have not been told that is permanent.   I still have pain my last surgery (a simple rectocele with a surprise hemorrhoid and fissure surgery).  I also have pain deep in my pelvis.  I have to wait 6 months after my last surgery to do further investigation of this pain.  I’m praying for no permanent nerve damage.    On top of this, I have a-typical, transient migraines.  Meaning they hit with no reason, and   they leave me in more pain that all my pain together,

I find that laying down relieves much of the pain in my pelvis and legs.  So I carry a pillow with me, and lay down when I can.  This is because when I stand or walk, I feel like I’ve been kicked between the legs with a baseball bat.  A bat so large that it hit my thighs too.    As you might expect, this does not feel good.  So of course I do what I can to avoid the pain.  I lay down.   

I look fine.  I look healthy.  But inside I’m a jumble of mixed emotions.  I can feel well enough some days to see a movie.  Other days I can’t even answer my phone from bed.   But I look fine, so must be feeling better, right?

For any guys, after 4 kids and so much pain and surgery, I'm not embarrassed about anything.  I only tone it down for my audiences comfort.   You have been warned.

In 2008 I was pregnant with #4.  2 months along, I felt like I was about to deliver.  Later I would describe the pain as “hit between the legs with a metal baseball bat.”    Midwife  said it was pelvic floor varicose veins and it would go away after birth.  It didn't.  It's been two years since then, and I still bring a pillow everywhere.  I lay down whenever I can.  It usually that helps the pain.  Sometimes it doesn't.   Getting thombrosed external hemorrhoids and a subsequent surgery, I had even more reason to lay down, and even bring a cot every where. 

Also during the pregnancy my gallbladder started to fail.  I didn’t gain any weight, and was on a diet of oatmeal, Jell-O, beans and rice.  During a painful labor with a failed epidural, I herniated a disk. 

So my 18 months of medical hell abbreviated in to “surgeries” is this:

Nov 2008 Thrombosed External Hemorrhoids surgically removed

Feb 21 2008 Baby Mark born

April 17 2008 Gallbladder taken out

May 2008 Rectal fissure surgery

Sept 2008 L4/L5 discectomy (sp) and clean out of left SI nerve root (lots of hip/foot pain)

April 17 2009 Prolapsed Rectum fixed, cystocele (bladder muscles sew back together to regain function), uterus lifted and sew back into place....all thru a c-section like cut.

Oh, I forgot that I had my tubes tied since they were all up and in there anyway.  Doc’s told me I would never recover from another birth.  But it took prayer and confirmation from the Lord that our family on earth was complete, then I agreed to be snipped. 

June 22 2009 Rectocele fixed, and surprise hemorrhoids and ANOTHER fissure fixed.

So everything should be back into place.  But I still feel like I've been hit between the legs with a baseball bat.  It moves down inside my thighs, and up into my cervix.  Sometimes I feels like there’s needles in my cervix.  Other times it feels like my...hmm...what's the word.  I don't have time to look up a map of the female body, but I think it's the labia  are burning or ripping. 

I've had 2 numbing shots to the pudenda nerve.   THEY WORK GREAT!! pain is gone for 2 whole days.  It only lasts a week until I'm back to normal pain.  But the break makes the pain more bearable.  (update, had another one end of Aug, didn’t help at all!)

The back surgery left me with permanent nerve damage to the left SI nerve root. Since it’s the root, it will NEVER heal.  I have constant foot pain/hip pain.  Like all pain, sometimes I can ignore it.  Sometimes it flares up to unbearable.  On top of that, I've always had a bad back, but since the surgery I've needed a TENS unit or medical patches to help the pain. 

I'm working with a team of chronic pain management people.  They are the people to just cope with pain, after all else has failed.  They do not diagnose.

I do plan on doing more testing to find out why I hurt.  But my docs says I must wait 3-6 month after this last rectal surgery's scar tissue to set before they can help me put the puzzle pieces back together.  

Even with pain med (right now it's Oxycontin, Lamictal, Lyrica, with Ketamine for breakthrough pain) I'm still in pain. 

After the first two surgeries I was still on lots of pain meds.  It was because I was doing too much.  We used all our Microsoft nanny hours, and had help for 2 weeks.  My husband even took time off work.   We did need someone to watch the kids all day, but we quickly realized it wasn’t going to be Mom or Dad.   Once we realized this was needed, we’ve had help while Grant is at work.  This has allowed me to reduce my pain and rest in bed.  And a good day, visit a friend or run an errand.   What we realized we needed was a nanny.

We've had nannies for over a year now (Since May 2008).  Every time I'm almost better, another surgery comes up.  Our current one has been amazing.  Cooks and cleans.  Hot dinner every night as I come out of my cave, and Grant comes home from work.  She takes kids, and sometimes me to doctor appointments.  Oversees kids chores and homework.  We are lucky to have found her. 

So since pregnancy, I knew I had a prolapsed rectum.  Pain and bowl issues made that surgery a higher priority.  And having a good nanny, we wanted to do this while we had help for the long recovery.  For about a month after surgery, I was just fine.  The pain went away!  Then I had my first period.  I later found out I had a huge ovarian cyst on the same side I had ovulated from...so I don't know how much that made a difference.  All I know was, the pain was back, like I had never had surgery.  Even upping my pain meds did little.  The next period was bad, but less bad.  And periods since them are less horrible, but still spike my pain.  Some docs talk about taking out my uterus.  But like I said, testing will take some time.

I want to be 150% sure that another surgery will help.  Waking up from this last one was horrible.  I could feel that every cell, every organ, every nerve had been taxed to the limit.  I knew that 5 surgeries…and another ~6 sedations for tests…was too much for my body.  I needed to wait.  I needed to heal.

I'm exhausted.  I'm depressed.  I'm missing out on so much. It adds up to  71/2 months I couldn't hold my last ever, new baby.    On top of that, resting means days that I miss with him.  So many firsts were for the nanny or my kids. 

Even longer that those 71/2 months,  sex was forbidden.  That sure ruined our last anniversary.  I'm lucky to have a strong, stoic husband.  He's been mom and dad for so long.  And held me up (or together) too. 

Imagine standing next to a  crying baby(don’t lift him!), and “refraining from embracing” a husband because you don’t want to ruin the doctors careful work.   Do that 5 times in 15 months.  Sucks doesn’t even cover it.  That is why swearing in now regular in our home. 

I don't have a diagnosis for the pelvic floor pain other than the general "Neuropathy" and "Entrapped Pudenda Nerve"  and the "Permanent Nerve Damage to Left SI nerve root".    All of my gut abnormalities have been fixed.    And now I wait.  Wait, in pain, for 3-6 months to do the next testing to tell me why it hurts to stand, to walk, to sit, to drive. 

To drive...that reminds me that all my cars have pillows.  So if someone else can drive, I lay in the back seat.  Sometimes squished next to a baby car seat.  But that is still better than even laying back in the front seat. 

I'm also working with a naturopath who gives homeopathic remedies to calm the cells, help in healing, and get my nerves to calm down.  She also does body work, that leaves me feeling human for many hours. 

Calming my nerves.  It's funny that when you talk about someone being nervous or having frayed nerves, it means that they are mentally struggling.  But for me, calming my nerves really means that the physical nerve pathways in my body are freaking out.  I have good and bad days, but change (doing something different) is sure to put my nerves on edge (ha, another mental term).    So pain turns ON very easily for me, all over my body.  But turning it OFF is a different matter.   It’s often an impossible matter.

I've already blogged here and here about other things I've done for the pain. 

So that’s me.  Oh, and to end the saga to you, three of my long time docs said that I look better than they’ve ever seen me before.   That was in September, and I was free of the worst of my pain till October.   Now it’s back.  Different, but still back. 

The saga continues, but only time will give me enough reflection and knowledge to write it down.

Just the medical stuff (Oct 2009 update)

Dear Readers: 

This is part 1 of 3 parts.  These are from a response to a kind note from my friend, Nikola.  She had written me a praising, uplifting letter.  I’ve used bold font to show clips from her letter.  Then I respond to them. 

So if you want to find the answer to these, read on! 

What's causing you pain?  Can you tell me exactly what your illness is?

Are you on pain meds?  Do the meds make you sleepy?

The good news is that the pain is better than its worse.  I feel like it fluxes between 2-5 (Pain scale of 1-10) during the day. The bad news is that I'm getting more involved in my family and Physical Therapy.  The bad news is that I don’t realize how much I’m doing on some days, and so I end up in more pain. On those days, I’m a 7 and I struggle to get back to my normal pain. So my free time has been decreased.  And I let September slip by without even a postcard to you!

You asked a lot of questions and said a lot of nice things about me in your two emails, so let me see what I can answer.

What's causing you pain?  Can you tell me exactly what your illness is?

Permanent Nerve Damage to the Left Sciatic Nerve Root, resulting from two failed back surgeries.  I have pain in my back, hip, leg, and foot all the time.  I notice it 75% of the time.   But I'm getting more done, and doing well on a med "cocktail" from my pain management doctor.

Herniated disk (L4/L5) I had surgery Sept 2008 for that.  I burst the disk during labor with my #4.   Pain and spasm are normal for me.  I do better for a while, then worse, then better.  But there is a slow overall decrease in the pain.  Between the disk surgery pain and my nerve damage pain further down, I'm not sure which one is which most of the time.  I can't do cortisone shots because I become psychotic on them.  I've never made it into the mental hospital, and I don't want to start now by having a "helpful" shot to give me a mini vacation. 

Encroached pudenda nerve.  This is because I have 4 children with a weak body, with low collagen levels.   (Didn’t know that at the time) So things didn't pop back into place as they should have.  My bladder fell (stage 3 cystocele, my uterus fell (only stage 1-2 prolapsed), my rectum prolapsed (stage 3?)and flatten (Rectocele stage 4).  I had two surgeries to put things back into place.  No more kids for us.  But the pelvic floor nerve is still sending pain.  It's getting better....time passing and again that "cocktail"  What it means pain wise is a shock of pain in my girly parts, on a good day.  On a bad day it feels like I’ve been kicked between the legs with a baseball bat.   On worse days I feel like the baseball bat was on fire, and I'm left with deep burning. Even my thighs hurt.  Laying down makes it better.  This is why I brought a pillow everywhere, and have laid down for 2 years.  Again, it's getting better.  I've recently sat thru church, sat thru choir and a choir event, sat thru "Wicked" with my daughter. 

Ovarian/PMS pain   Honestly, I don't know if this should go above or not.  All I know is that I'm getting big ovarian cysts, when I rarely did before.  And each time I have a period, my pelvic pain jumps thru the roof.  So even though I had my tubes tied, I'm going to be on birth control continually for the next year.  At that time I'll let myself have a few periods before deciding if a hysterectomy would be beneficial. 

Update: The Ultrasound showed NO cysts.  The doctor thinks that I have endometriosis.  Or scar tissue from the surgery.  But Endometriosis, this frightens me.  Next to cancer, this is a disease that I am very afraid of.  Surgery can remove the current growths.   But the way to stop it is to have a hysterectomy.    But perhaps it’s neither, but just a muscle spasm in the pelvic floor.  There is a group of doctors/books that talk about trigger points to fix this diagnosis of the pain.  And surgery isn’t needed.  Much to think about. 

Migraines.  They are worse than years past.   Doing naturopathic and new pharmacy stuff.  I know bright lights trigger it, aka, lying flat on the floor/bench and looking up into lights.  If I don’t risk it, and take the migraine meds early, I will find no relief in with any of my meds.  I hope the last time this happened will never happen again. 

Gall bladder:  My gall bladder failed during my pregnancy.  It affected what I ate months before and after the surgery.  I also had a lot of pain around my ribs before and after the surgery.  It's just been a few months that the pain has turned to very rare flashes.  And more recently I've been able to eat anything I want without intestinal consequences.  There was a time last year that I never thought I'd be able to eat a hamburger, fries, and a shake in one meal.   

Teeth/root canal:  I have two teeth that are causing me much pain.  With the cold weather change, I’m more aware of it!  I know I’m due for a root canal on the left back side.  But the right back side is new.  For most, this isn’t worthy of putting on the pain list.  But for me, even a tooth cleaning will be painful.  On top of the mouth pain, I am blessed with an increase in all the different pains in the body.  The brain is a complex, mysterious thing!

Narcolepsy:   Not painful, but sure scary and can send me into a sort of pain attack.  My Narcolepsy is in the form of EDS, hypnagogic hallucinations, sleep paralysis so even at my best health, I've usually needed an afternoon nap.

That's all I can think of now.  I just got back from PT, and the fatigue is setting in. 

Are you on pain meds?  Do the meds make you sleepy?

I've been on and off pain meds from surgery to surgery.  The pain wasn't getting better within each surgeons expected time.  So I had a great primary care doctor and pain management doctor to get me to this point.  Now I'm just trying to medicinally manage the pain I might have all my life.  My pain management meds are around 7.  I take 5 everyday.  Lyrica and Lamictal (old siezure drugs that help nerve pain) Baclafin (MS use it to stop muscle spasms) Oxycotin (for what pain is left), Birth Control (stop my recently painful periods).  For migraines I use Relpax.  For those days that the pain still is unmanaged, I have a nasal spray that helps the pain in 5 minutes (Ketamine). 

The meds that I'm currently on don't make me sleepy.  If they did at first, I didn't notice.  Just healing makes me sleepy.  And I've got some narcolepsy (in the form of EDS, hypnagogic hallucinations, sleep paralysis so even at my best health, I've usually needed an afternoon nap.    Earlier this year, I couldn't drive from the old meds.  But the mix has changed, and my brain is cleared, and the doctor okayed it.  Driving myself to doctor appointments again is wonderful!  Hmmm, really, having the ability is wonderful.  But driving is a sure way of increasing my pain!

My kids are growing so fast, so they have kept me going better than I would have been without them.  I've tried to hurry anything that will get me functioning enough to be part of their lives before they grow up.  This includes using strong meds (2 anti-seizure meds good for nerve pain, opioids, MS muscle spasm drugs).  These meds could affect me badly later in life.  This biggest risk could be addiction to the opiates.  I'm willing to risk that, and so are my doctors.  Raising my babies is the best part of my life.  And I'll do anything to have more of this time. 

 

want to see the rest of the letter?  Part 2, Part 3

Oct 2009 Update: Why I am NOT strong or an example of faith

Dear Readers: 

This is part 2 of 3 of a letter.  In the interest of time, I have copied from a letter I wrote to my new friend, Nikola.  She had written me a praising, uplifting letter.  I’ve used bold font to show clips from her letter.  Then I respond to them. 

So if you want to find the answer to these, read on! 

Do you ever say -"WHY ME..."  "Why doesn't this get better?"    You deserve to have days when you are down and feeling sorry for yourself -

You are such a good person and trying to keep your faith and take care of yourself and your family all while you are in PAIN.  I ADMIRE YOU SO MUCH.   (And) seeing your example of staying strong through difficult times is going to be very good for them.

You have already shown Satan that you will never give in or lose your faith.

Seeing your example of staying strong through difficult times is going to be very good for them

What does your husband do?  Is he able to work from home sometimes so he can be there to help you with the children?  I'm sure this is very hard on him too

Thank, Nikola, for thinking so highly of me.  I have my responses below.  So hold on and get comfortable!

.

Do you ever say -"WHY ME..."  "Why doesn't this get better?"    You deserve to have days when you are down and feeling sorry for yourself -

I've spent much time feeling sorry for myself.  Hating my situation.  Hating God, since I felt very impressed when it was time to have each child.   How could God want me to have kids, knowing that this would be the result?  I couldn't even hold my last baby for half of the first 18 months of his life. 

I feel frustrated at God that he let this happen. I feel that more than “why me.” We felt very inspired to have a 4^th child. We even questioned God several times. We had family members openly against our choice. I even had several early miscarriages, and took something like 6 months to even get pregnant. I’ve been reading a lot about chronic pain. I’ve learned that anger is a separate symptom of pain. I am sure filled with anger.  I can think of many times that I've been overly frustrated at Grant and/or the kids, and yelled more than normal.  Then I realize that I'm in pain that it was quietly building.  If I just take some time to rest or take meds or both, I feel less angry.   Because of that, I don't think I'm one to be admired.  I've hated this, I've been kicking and screaming the whole time, and I've felt very left out of life.  I still feel that our pleas for help were ignored.  But I hope that I will see it differently when this is all past.  If it ever passes. No, when the worse has passed, and I get used to what's left.

You are such a good person and trying to keep your faith and take care of yourself and your family all while you are in PAIN.  I ADMIRE YOU SO MUCH.   (And) seeing your example of staying strong through difficult times is going to be very good for them.

Don't feel like a good, faithful, strong person.  I'm a broken person. I know how much I've turned to swearing to express the pain and anger.  Even though I'm trying to keep it in my head more, it's still there.  I'm currently averaging 20 swears toward my family during the weekend, and 15 during the week.    And those numbers ARE me doing better.  So how can that be admirable?    I don't feel like I'm strong.  I've felt more pain that most of all my doctor's (and dentists) patients.  I've cried out in that pain.  I've curled up in a ball and given up so many times.  I've woken up, sad that I woke up and had to face another day in pain.  Update…since I wrote this I’ve been actively and painfully stopping myself from swearing. My family has realized how hard it is for me and is celebrating my efforts. You’d think I was potty training. Really, I guess its potty mouth training.

How is that an example of a strong woman?  How is that admirable?   I've heard that said by so many women, how they admire me for going thru this, that they think I'm so much stronger than them.   I guess I must look nicer than I feel, because I don't see it. Or maybe because I can make a few muscles turn my lips into a smile...maybe it’s that smile that people think that I'm strong and  worth admiring.  When instead, maybe I'm tired of crying. 

And keeping the faith, and all that.  Oh, that's not me at all.  As I said before, I've hated God.  I don't see how this is going to make me a better mother.  I've felt....removed?  left out?  invisible?...of church, of Relief Society.   At the beginning, I returned to church quickly after surgeries.  I wanted to be there.  Because I could lie down at church just as well as at home.  I was going to be in pain either way, and I'd rather get to talk to a few new faces than be at home in bed.  It's funny, because AFTER I got better, being just in chronic pain instead of acute pain, I stopped wanting to go to church. I've only kept going because of my husband's stubborn insistence.  It was easier to go than have all the questions and pressure.  

I've watched friendship disappear.  Groups of friends going on without me in gatherings, carpools, visiting.   I've fought with leaders.  I've felt ignored and forgotten.   2 Wise women have stood by me, encouraging me to take the higher road.  Encouraging me to read the scriptures, to pray, to hang on to whatever faith I can.  That faith comes in spurts.  Watching general conference has been a big boast.  I wouldn't have said those two months ago.

I AM NOT STRONG. Grant is strong. Grant has carried our family thru this. Grant has made me strong. Grant is amazing. I get my strength thru him. I keep my faith because of him. Even this paragraph isn’t enough to thank him, or tell about him.  Just because I’m alive doesn't mean that I’m strong.  I feel broken inside.  Sadly, I feel like a victim to my bad health and the reactions of others.

You have already shown Satan that you will never give in or lose your faith.

I have lost my faith many times.  I have cried thru church.  I have walked the hallways to avoid going into Relief Society.  I have mentally checked out of classes, because I was overwhelmed.  I would replay movies or think thru a book plot to keep myself in my chair.  I would think about what food I would treat myself with if I stayed in the room.  Often that meant running into the house for an ice cream cone the way most people would run for the bathroom. 

I must say that I despise the story of the rolling rock that is often used in lessons.  So far, I have found no scriptures that back it up.  You know the story, “I am like a rock, rolling down the hill.  When I rub against others, I lose a corner here or there.  In the end, I am a smooth, polished rock” 

If I’m a rock, I’m in pretty bad shape.  I don’t feel like I’ve lost any corners.  I feel like this trial has left cracks in my rock.   I can’t be alone.  But stories about people who didn’t grow and learn from their trials are not in the Ensign.   So some people’s faith grows the best during trials.  I haven’t experienced that. 

Seeing your example of staying strong through difficult times is going to be very good for them

You can see from the above faith and anger stuff, that I don't think I've been strong.  Maybe it's just because I'm in the middle of this.  I hope I have set other examples for them. My kids are growing so fast, so they have kept me going better than I would have been without them.  I've tried to hurry anything that will get me functioning enough to be part of their lives before they grow up.  This includes using strong meds (2 anti-seizure meds good for nerve pain, opioids, MS muscle spasm drugs).  These meds could affect me badly later in life.  This biggest risk could be addiction to the opiates.  I'm willing to risk that, and so are my doctors.  Raising my babies is the best part of my life.  And I'll do anything to have more of this time. 

What does your husband do?  Is he able to work from home sometimes so he can be there to help you with the children?  I'm sure this is very hard on him too

Grant is a computer programmer. Because of his job, we’ve had complete insurance coverage. I’ve already hit 100,000 for the last 2 years. His work allows him to from home. Finding working from home has mentally not been possible.

We've had a nanny for over a year, so my husband can work, and I could heal.  And have a surgery.  And heal.  And repeat.  Honestly, we tried having him work from home.  His work was supportive.  It turned out horrible.  He really needed some time removed from the situation to stay sane.  Work was the only place that problems could be fixed.  Just from this being asked this question, you are aware that chronic illness is a family illness.  This has been very hard on Grant.  He can't take a pill.  He doesn't get to nap.  If I think about it, what has helped him most is the nanny having a hot dinner on the table when he gets home from work.  

Instead of working from home, we've had a string of nannies for months, before a friend introduced us to "Nanny Julie".  For the last year, she's kept this family running.  She's been the strong one, the helpful one.  We've been so blessed to have the resources to have a nanny during the work day.  Our penny pinching early days really helped us out.    My husband jokes that paying for a nanny hasn't been that bad.  When I was bedridden for so long, I couldn't shop.  Our budget had much unspent money in food, clothes, kids stuff, household stuff, eating out.  All because HE had to do the shopping and HE only shops from the list.   

When I ask him how he coped with all the extra duties, and nursing me, and my grumpy moon, he said this:  There are needs and there are wants.  You don’t have a choice when it comes to needs.  No matter how tired you are, load the dishwasher.  Start the laundry.   Wants are another matter.  I’ve been very negative towards him about wants.  I felt bad for that, and said sorry.  He says he doesn’t even think about it, if he can’t change it.  So he wasn’t bothered by it.   What a great man!

Phew, if you made it this far, you’re either my shrink or a stalker.  As Kevin Bacon once said, as long as you have stalkers,  you know you’re still famous.  Stalk on, my friends, stalk on!

want to see the rest of the letter?  Part 1, Part 3,